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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THE ELDERCARE TIME CAPSULE

I've accepted the challenge! Throughout April, I'll be posting as a health activist writer in the #HAWMC (Health Activist Writing Month Challenge) by #WEGO http://blog.wegohealth.com/  Each day offers a unique prompt that will take us in a variety of directions. Let's see where we go! Here's the first one:

Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it? 

In 2112 they would open my time capsule to find photos, audio clips and videos showing that we in 2012 respect our Elders less, and rarely turn to them for guidance. Many live in institutions, their lives driven by medical systems and routines. Photos are of people who have lived long lives, their faces often showing loneliness, helplessness, or boredom ("the three plagues", as identified by Dr. Bill Thomas). In one photo, wheel chairs are lined up in sterile hallways outside a bathroom. In another, generally kind, loving staff scurry through their duties, trying to keep up. Meaningful connection and listening to Elders is, apparently by necessity, given short shrift. But institutional living conditions are a good deal better than in 1912—far from ideal, but heading in the right direction. Of course in 1912 many more Elders lived with extended families.

Inside the capsule also are newspaper ads for anti-aging products and articles telling the story of a society with an aversion to accepting the realities of aging. Long-term care funding sources are drying up. However, the time capsule also reveals the beginnings of the movement that, by 2112, has changed all of that. Shortly before 2012, The Eden Alternative (www.Edenalt.org) went international, bringing to the Eldercare world the concept of person-directed care. (Why, wonder those in 2112, was it so radical that Elders should have a say in the quality of their lives?) The Eden principles include nursing homes and other care-partners focusing First on their residents and loved ones. Eldercare cultures had begun to shift in ways that made everyone happier and healthier. And conversations such as ChangingAging.org began to engage the culture as a whole in a new conversation, reinventing what aging could be.

Included in my time capsule would be a disk of YouTube clips of Greenhouse Project homes that are run in a person-centered way. An Elder, who has given up feeding herself and speaking, grabs the spoon from her son, and the video ends with her singing Amazing Grace.

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Creating the Nursing Home of the Future - Making Eden-like Culture Change on 2 hrs./wk

Ever since my decade of caregiving, I’ve been determined not to end up like my mother. My nursing home is going to be a place where I can feel useful, valued, engaged, and loved. But why aren’t more residents clamoring for change right now?

Generational values and medical institutional norms in nursing homes collude to foster a system that will stay stuck without radical concerted culture change. Many of our Elders don’t know that we each have the legal right to define our quality of life, regardless of age or circumstance. And whether or not they know their rights, they were raised not to rock the boat. Who wants to be the one to speak up? Even some of us boomers have timid tendencies, yet if we don't begin now to change the culture of nursing homes, we'll be stuck living in "homes" that, despite bright colors and crafty activities, will perpetuate helplessness, loneliness, and boredom.

When I took the Eden Associate Training, my classmates were all employed in nursing homes—after certification they would put their training to immediate use. I was self-employed. I needed to find another way to be part of the culture change movement. I joined a newly formed Coalition for Culture Change (many states have one) but I also wanted to do hands on work. Finally I learned of our state’s Long-Term Care Ombudsman program. By going through their free training and dedicating just two hours per week, I would finally be able to do Eden-like work.

Now I think of myself as taking on Dr. Bill Thomas’ three plagues: Loneliness, Helplessness, and Boredom. When certified, I will be empowered to walk into my assigned nursing home unannounced and at any time, to engage directly with residents and staff on behalf of individual residents’ quality of life. Any Elder who feels they lack a voice or a choice can ask me to be her/his voice. And the state and federal Ombudsman offices will serve as my backup, the clout behind the smile.

Consider ensuring a quality future for your Elder self, while making a difference for Elders right now. Every state has a Long-Term Care Ombudsman program, though each operates a little differently. Contact your state Ombudsman Office to find out what’s possible. http://www.ltcombudsman.org/ or http://www.aoa.gov/aoaroot/AoA_Programs
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RESPECTING ELDERS

Bernie Siegel suggests in “Love, Medicine and Miracles” that it's the feisty, opinionated patient who stands the best chance of survival.

I recently gave a keynote address to a local caregivers’ expo. During the Q&A, one woman raised her hand and said, “What do You think about the way people talk down to old people?” I told her that it dumbfounds me, that I have no idea where people learn to think that’s the way to speak. And then I continued to wonder...

Why Do so many people talk baby talk to elders? Could an elder supreme court judge possibly enjoy being patted on the head? And for that matter, how do they get away with it? What keeps elder parents, pianists or Marines from kicking a few shins?

I remember when I would bring my still sharp Phi Beta Kappa mother out and about in her wheelchair, and doctors and other professionals would address me, speaking about my mother in the third person. Did they assume that her brain and self-respect had been gradually leaking away since she turned 70?

I guess people of my parents’ generation were so schooled in being gracious that they put up with such treatment without a fuss, but it’s going to be a bit different when the children of the 60’s enter elderhood. We broke the mold when it came to self-expression.

A nursing home filled with residents of the “Me Generation” will be quite a different story. We’ll be rebelling at every turn. We’ll be leading workshops to train the staff in providing truly respectful service. We’ll have a ringleader or two, and we’ll stage sit-ins at the nurses desk. We’ll demand that people knock before entering, bring breakfast only when we’re ready, and offer more opportunities for participation than sing-alongs and making cookies.

We’ll look for ways to improve the running of the place. We’ll take over the “activities program” and while we’re at it, we’ll come up with a different name for it altogether. Activities implies busymaking, as though all people need to feel enriched is to be kept active. We’ll have “life enrichment” programs maybe. Alive ‘n Kicking seminars. And if we can remember what we learned from Our elders, we'll do it with a bit of grace.

I daresay that "respecting elders" will mean something a bit different for us, the Boomers. It will mean something like listening to what we want, appreciating us for who we are, connecting with us on a personal level, and honoring our history.

If you were in a nursing home, what would you want your life to be like? What would you be doing? What new experiences will you be instigating? Who’ll be calling the shots for you?

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FROM CLUTTER TO HOARDING

What can a person do when they think a loved one has an unhealthy amount of stuff in their living space? A recent LinkedIn discussion on hoarding got me to thinking, What are the issues raised by such a situation? And how can family members disentangle from their own feelings about clutter for long enough to know how to broach the topic, or even whether it is appropriate to say something?

As both a caregivers’ and Elders’ advocate, I can see both perspectives. As the discussion developed, I saw not only how easy it would be, in the heat of the moment, for us to sidestep the issues of an Elder’s individual right to choose, I also saw how very fuzzy the line is for most of us between “normal” clutter and a compulsive health issue.

If a caregiver asked my advice as a caregiver’s coach, I would first ask questions to identify the context of the situation, such as:

• Is your loved one’s behavior diminishing her/his enjoyment of life? Or would (s)he be dismayed at the idea of having their clutter being gone?
• Is the situation, right now, a serious health hazard?

If the caregiver were unsure of whether a health hazard existed, or if the loved one’s clutter was actually providing a healthy comfort, I would tend to think that any intervention would be inappropriate, though an explorative conversation with the Elder might be of help. Before speaking, it would be important to be very clear as to one’s feelings and motivations, and so I would ask the caregiver:

• How much of the “problem” rises from Your discomfort with clutter? What does it mean to you?
• Does some of your discomfort come, perhaps, from seeing your Elder behaving in perhaps an uncharacteristic way? Does it, let’s say, look like “slipping?” Or losing control? (Anyone applying this sort of judging attribution probably won’t be effective in starting a respectful conversation.)
• Are you capable of broaching the topic with your loved one solely out of an intent to support her/him in having the lifestyle (s)he wants? Are you capable of separating your own feelings about it, from your desire to be of service?

The LinkedIn discussion ultimately gave helpful guidance in discerning the difference between “normal” clutter and chronic hoarding. Everyday accumulation of stuff is not to be confused with the mental illness of hoarding. When thinking about a loved one’s propensity for clutter, it pays to know the line between normal clutter and chronic hoarding. Learn more rather than risk overstepping the personal rights of your loved one. Visit The National Study Group on Chronic Disorganization (NSGCD) at www.nsgcd.org where they’ve identified a five-level hoarding scale to help determine a person’s level of need, as well as the level of training required of those seeking to help them. Levels 1 and 2 are degrees of normal clutter. Levels 3-5 represent behaviors ranging from mild compulsion to mental illness to health hazard. These last three levels may require the help of professionals (with the Elder’s agreement) such as professional organizers or mental health professionals. For health hazard situations, if respectful conversation hasn't worked, before calling the health department try to rally the family to stage an intervention.

My advice? Each of us at any age has a right to make our own lifestyle choices, so tread carefully when considering taking action on behalf of a loved one. Talk to your Elder first, then family. Get support for yourself, and ask advice of professionals. But if your loved one is level 1 or 2, with no apparent hazard to their health or well-being, let them be. Each of us has our own standards of neatness and cleanliness. And consider this: creation of clutter and upset about it are rarely about the stuff.
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Eden Alternative Transforming Long Term Care

Just returned from an amazing three-day training, and am now a certified Eden Alternative Associate! http://www.edenalt.org

Because the training changes the way you See (not just the way you think) it was predominantly delivered with a right brain approach. Brilliant!

This work, begun by Dr. Bill Thomas, is transforming the experience of aging in nursing homes.  Check out what we have to look forward to!
http://bit.ly/1W74z8

So how can nursing homes shift their culture in a way that works? There's more to it than is immediately obvious. On the surface in the video, you see some of the actions that can be taken, but underneath is the magical element without which the shift can't happen. It's a shift in the Being of everyone involved that rolls out as a beautifully designed step by step process. If you follow the Eden plan, it unfolds gradually as a journey. The change makes miracles in the health and well-being of the fortunate elders... and everyone. And it's cheaper than the traditional hierarchical model!

One last little benefit? Any nursing home taking this kind of approach will have far better ratings in the radically changed annual surveys. Here's more info on that from Pioneer Network: http://www.pioneernetwork.net/Policy/CMS/

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Culture Change in Nursing Homes

This year the federal Centers for Medicare & Medicaid Services are finally upholding the Olmstead Act. Below are resources and information.

The Olmstead Decision of the Supreme Court (1999) states that: ... under the Americans with Disabilities Act, it is a form of discrimination to isolate and segregate persons in institutions when they can live like other people in the community and enjoy the benefits of society.

State surveys of nursing homes will now include a “self-determination” component that will be embedded throughout the survey, addressing all levels of nursing home operations. Below are some links to key culture change websites. Check out The Pioneer Network's 40 page document about the changes to the nursing home survey.
But first, here are some of the radical inspiring results of a typical culture change program:

Results of The Tupelo Project (Tupelo, Miss.)
The Tupelo operation has been cost neutral in a 99% Medicaid funded facility

• Elders moved to the Green Houses without transfer trauma.
• Elders report very high levels of satisfaction with their quality of life
• Families report high levels of satisfaction with care.
• Dementia related behavior problems have been markedly reduced.
• A decrease in wheelchair use related to the short navigable distances.
• A decrease in urinary incontinence.
• An increase in appetite, food consumption with accompanying weigh gains.
• A decrease in the use of nutritional supplements.
• An increase in elder engagement in personal and household activities.
• A consistent care staff with a 10% turnover rate in 2 years (nat'l average 90% annually.)
• Two deficiency free state surveys.

VISIT THESE GREAT SITES to learn more! 

Pioneer Network - http://www.pioneernetwork.net/
The Pioneer Network is a clearinghouse of information and resources about culture change in nursing homes. The Pioneer Network facilitates deep system change and transformation in our culture of aging.
"We: Create communication, networking and learning opportunities; Build and support relationships and community; Identify and promote transformations in practice, services, public policy and research; Develop and provide access to resources and leadership."

Eden Alternative - http://www.edenalt.org/about/index.html
Information and tools for making life better for our Elders and those who care for them.

Greenhouse Project - http://www.ncbcapitalimpact.org/default.aspx?id=664
A revolutionary new model of care developed by Dr. Bill Thomas. The ideas and Principles of the Eden Alternative with small houses for 6-10 Elders who require skilled nursing care.

Action Pact - http://www.culturechangenow.com/
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