Changing America's Culture on Aging with Rose Marie Fagan by Diane M. Cooper

Diane: What is the Pioneer Network?

Rose Marie:: The Pioneer Network began in 1997 by bringing together thirty-three people from around the country who had a new vision about the actual role of elders in our society, as well as how people could live and work in long-term residential care. Both are related, because the way our elders are treated in nursing homes and long-term care facilities is a reflection of the lack of regard we have for them in our society.

Many other cultures revere elders and honor them. Elders have a role in carrying on a legacy. Native Americans call their elders "wisdom keepers." That's really what the Pioneer Network is about, honoring elders and putting our values[1] into practice so that we're "walking the talk."

We believe in the sanctity of life, and ask ourselves all the time: What are we doing in practice that shows that? If we say we value and respect each person and all staff and residents, then what are we doing in practice that sends that message?

So it's about looking at everything we do and seeing if it ties in with the values we have established.(1)

Since 1997, we've been meeting twice a year around the country. Every place we meet, we collect more people who are hungry for change and know that we can create a future for ourselves that's better than what we've got now.

Diane: It seems as though this issue is important for every one of us, since we will all go through the process of aging and end up an elder.

Rose Marie:: It's really about getting in touch with the elder within us already, and creating our future. And it involves all of us, not just people who work in long-term care, but writers, architects, regulators, and educators. People who teach nurses and CNAs, doctors, elder-law attorneys, and many more professions are involved. It has become a network of people all across America, from all walks of life, embracing the philosophy and values we have established, each in his or her own way. Together, we can bring forward a tremendous and impactful cultural change to our society.

Most of our focus in the past was around nursing homes, but in 2000 we made a conscious decision to expand this to the whole continuum of residential care and to the very culture of aging in America.

Diane: What do you see as the major message that needs to be changed within our culture?

Rose Marie:: That a person should be valued in every stage of life — as a child, as an adult contributing to the gross national product, and then in their years as an elder. I think we need to understand that all stages have a capacity to grow and to contribute. Even old, frail people who are residents of nursing homes have that ability to contribute, to give to others.

Our vision for the future is life affirming. Elder people have a right to live a life with meaning and have it be humane and satisfying — a life that is pleasurable. Elders have a right not to have people figuring out what stage to give up on them and just put them in a warehouse until they die.

Our country is built on rugged individualism, independence, and freedom, but we don't give elders those rights. We need to free them.

Diane: What do you mean, "free them"?

Rose Marie:: We segregate people in nursing homes. And in the nursing homes, we segregate people with dementia from the people who are cognitively alert. We segregate people with disabilities.

We segregate poor people and put them in projects — black people live in the cities, white people live in the suburbs. In the same way, we segregate elders and put them away in institutions.

Diane: So give me a picture — go to the end result and describe for me the optimum picture of what the Pioneer Network is going for. You talked about segregation and putting old people away — let's say we don't put them away. How will that look?

Rose Marie:: There need to be alternatives to nursing homes as they are now. We need a situation where people are able to "age in place" — where they can have services brought to them and still be connected with the community.

What we do now is, we put them in a nursing home and it is like a prison, a regimented environment where everything is on a schedule.

Ideally, nursing home residents would be not only allowed but encouraged to go out and interact with the community. As it is now, the community at large comes in and interacts with them. Instead of taking residents to a casino, they bring bingo into the nursing home. Instead of taking residents into the community to go to church, they bring church into the nursing home.

I'm focusing on the nursing home situation because it's a microcosm of our society and our values. It's easy to look at a nursing home and see how that mirrors back to us a whole variety of things. Who lives in a nursing home? Old people. We don't value old people. Most of them are women, and we devalue them in our society. The money is not there. The caretakers also are primarily women, and they are poorly paid. There are race and diversity issues. Our attitudes on death and dying are also portrayed there.

So the vision of the Pioneer Network is of a life where people are living in diverse communities that are open and loving, where people really care and matter to one another — where people are able to hang on to their homes their entire life if they desire, and where caregivers are valued.

Diane: The position of caregiver is one we often don't think about as being one of importance.

Rose Marie:: Yes, well I think being a caregiver is sacred in the most universal sense of the word. Their work is caring for total strangers. What would happen if being a caregiver was an honored position in our society — where it was an honor to care for an elder?

Diane: I'm in my forties, and just this year, with the death of my father, I really started to think about my aging process and the quality of life I want as I grow into my senior years.

Rose Marie:: You're in your forties beginning to think about this, and I'm in my fifties. With the current state of affairs, I begin to ask myself, At what stage in my continuum of life will people give up on me and say, "Well, she can't learn anymore, she's too old," and just put me away and give up on me?

Inside, I'm still young. I want to continue to learn and have joy in my life. As long as I'm living, I want all of those things. And I'm no different from you, and you and I are no different from any one of those residents in the nursing homes or anyone in our society who is over the age of seventy.

Diane: But isn't this an economic issue? I don't think that anyone would really choose to go into a nursing home unless they were in a situation where they couldn't afford home care or couldn't afford to feed themselves because their retirement income wasn't enough. I don't think anyone chooses to go into a place like that.

Rose Marie:: No they don't. But we haven't come up with any alternatives.

Diane: It's as if our communities and our families or our "tribe" doesn't have a way to care for our elders. Our society doesn't honor them. It's not even built-in to the family structure anymore.

Rose Marie:: That's right.

Diane: So, even though it is extremely necessary, we're talking about a monumental change that has to begin at the youngest stages of life. To handle the situation with the elders, we will have to ask for an entire political and governmental change.

Rose Marie:: Yes, a very deep system change. It's not as if Grandma is growing old in your house like it was years ago. We actually have to contrive by intention to bring people of different age groups together.

But instead of adding more legislation and regulation to the system, I think we need to ask ourselves what is wrong with our culture and make the change there.

This is the current situation, and people are saying they don't want it this way. No one wants to live or work in these places. People don't want to work in these places for a reason, and they don't want to live there for a reason. You can't thrive in a place that looks and smells like a hospital and where all risk and choice are taken away.

Diane: Isn't this also a reflection of our society's thoughts on death?

Rose Marie:: Oh, yes! We cover that up in nursing homes, too. I've talked to so many people who have shared stories about this.

If you and I were nursing home roommates and I died, you would either be removed from the room or your curtain would be drawn around you, and then I would be taken out and probably wheeled out through the basement, out the loading dock. Nothing would be said to you or the other residents. Then, in a few days, a new roommate would come in, and they would get my bed and my seat in the dining room and my shower slot.

What message is that sending to you as my roommate? People come and go and people disappear, and no one notices. What about the idea of celebrating life and recognizing that someone valuable has died. That sends a different message that says, "My life matters, and I'll be remembered too."

It gets so overwhelming when you think of all the pieces that have to be fixed. I always say its like eating an elephant.

Diane: I'm overwhelmed just thinking about the monumental changes that will have to take place. My own father had to go into a nursing home just before he passed away. He was so afraid and he wanted out of there so bad, and there wasn't anything my mother could do to take care of him because he had broken his hip and needed extra care. He finally came home and passed away in a hospital not too much later, and even then the healthcare was really questionable there. I don't want to end up in either place, thank you!

Rose Marie:: And therefore, look at the message that sends us at our age. Growing old is a bad thing in this society. We're not valued because we are no longer contributing to the gross national product, and when we get old, all these bad things are going to happen to us.

I'd rather have the comfort of knowing that all the years I've worked and the fact I've raised a family plus the community service I've put forth will be valued.

Diane: So how can someone reading this make a difference?

Rose Marie:: I think the first place we need to start is with ourselves. It all begins with our own journey and our own transformation. I suggest that people do some work around their own attitudes about aging and the value of elders in our society.

Diane: Are you speaking about the love of self?

Rose Marie:: It is about love of self and our own aging process. To love ourselves in all of the stages of life, and to find an appreciation for the uniqueness of each phase.

There are so many ways to become involved, because the "elephant is so big," so to speak. Look for the piece that interests you, and bring your talents to that area.

People can bring new attitudes toward aging into their workplace. Educators can teach about it. Architects can create universal designs to help people stay in their homes longer. Planners can design communities where people can age in place, communities that will keep people in their homes instead moving them to institutions.

No one can sit on the sidelines on this. Each of us has to get involved or it's not going to happen.

Diane: It seems to me that there is so much to be done. If we sit on the sidelines while we're young, the changes that need to be happen won't be available to us twenty or thirty years down the line, when we might need them.

Rose Marie:: The time is right now. We are going to have an aging population. The Baby Boomers are coming right up there, and they will be a catalyst and a force for this work as well.

Diane: Does it also serve to begin to consider our own family and our aging parents and aunts and uncles? To think about other ways of taking care of our older family members?

Rose Marie:: I think even having discussions helps. My mother died in the year 2000, and she was able to live in her home up until she went to a hospital and then to a nursing home. I wasn't able to take care of her because of the physical needs she had. But just being able to have those discussions is helpful. We're not even comfortable talking about the aging process or death or what people want when they reach these critical points in life.

We need to start talking about this within our families and with others who care and are trying to do something.

For example, the Pioneer Network is having a conference this summer, August 14 through 17, in Chicago. It's called the "Coming Champions of Culture Change." It is our hope the people who come will leave with the tools, skills, and knowledge to become active agents and champions of culture change.

That's how this movement will grow. It's a social movement!

Diane: Thank you Rosemarie.

These are values as set forth by the Pioneer Network:

Know each person.

Each person can and does make a difference.

Relationship is the fundamental building block of a transformed culture.

Respond to spirit, as well as mind and body.

Risk taking is a normal part of life.

Put person before task.

All elders are entitled to self-determination wherever they live.

Community is the antidote to institutionalization.

Do unto others as you would have them do unto you.

Promote the growth and development of all.

Shape and use the potential of the environment in all its aspects: physical, organizational, and psycho-social / spiritual.

Practice self-examination, searching for new creativity and opportunities for doing better.

Recognize that cultural change and transformation are not destinations but a journey — always a work in progress.

For more information on the Pioneer Network and the upcoming conference, go to their website at: PioneerNetwork.com.