Natural Health

Bill Thomas would like the epitaph on his tombstone to read, “He buried the nursing home.” A geriatrician who became indignant about the state of nursing home care when he was the medical director for one in New York, Thomas is now one of the nation’s most outspoken critics of institutional eldercare and a tireless advocate for homelike alternatives that restore meaning and dignity to older people’s lives.

In interviews, the 48-year-old Harvard-trained physician is given to statements such as, “Just the words ‘long-term care industry’ make me want to throw up” and “A hospital and a poorhouse got together and they had a baby, and the baby was a nursing home.” But at heart, he is an optimist and visionary whose solutions for improving eldercare are yielding impressive results.

Thomas revamped the nursing home he worked at in New York by moving in plants, dogs, cats, and birds; replacing the lawn with an organic garden; and focusing more on residents’ needs. After he did, the New York State Health Department reported a 50 percent decrease in infection and 71 percent decline in daily drug costs for each resident, as well as a substantial drop in the turnover of staff nurse’s aids. Thomas then expanded that model into the Eden Alternative, a foundation that has helped create 300 homes and nursing home conversions in the United States and another 200 in Europe.

One of Thomas’s latest projects is to replace nursing homes with Green Houses — groups of small, cozy homes that offer private bedrooms and baths, and “hearth rooms” with an open kitchen. Residents can eat when they want, sit by the fireplace, and take part in all house decisions. Meals are served around a big table, and some Green Houses bake bread or cookies daily and serve soup from a big tureen on the table to promote the feel (and scents) of home. There are now 41 Green Houses in ten states, but the Robert Wood Johnson Foundation recently provided a $15 million grant to Green Houses and the nonprofit group NCB Capital Impact to build more during the next five years.

In addition to overseeing several nonprofits, Thomas writes the daily blogChanging Aging and has written five books (including What Are Old People For? How Elders Will Save the World). He and his wife, Jude, have five children; he credits two of his daughters — Haleigh and Hannah, who are severely disabled — with helping him better understand the loneliness, helplessness, and boredom experienced by the elderly.

In a recent phone interview from his home in New York, Thomas’s signature exuberance and optimism were palpable, and his conversation was spiked with his boisterous, infectious laugh as he talked about his newest project, Eden at Home; what to look for in long-term care; and how even the most frail parents have something to teach their children.

You have said that your passion and mission is to “pull the plug on nursing homes.” Why?

Well, nursing homes are a 19th-century solution and we’re living in the 21st century. So we’re two centuries behind, and it’s time to let them go — peacefully, I think, but they need to go. Human caring does not function according to economies of scale. Things like accounting and food service have economies of scale, but general caring does not. So what we’re doing in traditional nursing homes is sacrificing the thing that is most important — genuine caring — on the altar of efficiency for things that don’t matter as much. It used to be that we had to do that because there was no other choice, but now there are other choices.

What are the biggest obstacles or hurdles you’ve come up against in trying to revolutionize nursing home care?

The number-one obstacle is the terrible effect that people’s low expectations have on the field. When people expect nursing home care to be sort of sterile and lifeless and without passion and commitment, then they too often get what they expect and there’s no pressure for change. So one of the greatest things that could happen to really revolutionize the field is for consumers to jack their expectations way up. That will create the pressure we need to change the field of long-term care.

Do you have any suggestions for people who are considering nursing homes for their parents right now?
Join the revolution! In other words, someone you love needs this kind of care, so be part of the solution. You don’t have to accept the status quo. As part of your loving commitment, you can become an agent for change inside this field.
Do you have specific suggestions for how to do this?

First off, find out whether and to what degree the nursing home you’re involved with is participating in the “culture change” movement. There’s a reform movement out there that’s dedicated to bringing heart and soul back into long-term care, and if the nursing home is part of it, that’s an encouraging sign and you can help them go further. If they’re not part of it — and the truth is that most nursing homes are not — you can, hopefully, lead them in the right direction. Again, when the consumers drive it, it will come.
How do people know if their parents’ nursing home is part of the reform movement?

Well, if I were there with you, the first thing I would ask is, “What is your mission here?” There are basically two answers you can get. One is, “We help sick, frail, demented, disabled old people cope with their losses. We have physical therapy and nurses and doctors, and that’s what we do.” The other answer is, “We’re here to help people grow. We believe that your mom or dad or the person you love has an opportunity to grow, and we want to help them take full advantage of that opportunity.”

These are two different philosophical stances, and ironically, the first one can sound really compassionate — “We help sick old people,” and that’s nice — but it gives away the game, which is, “We think it’s kind of sad and hopeless, and aren’t we wonderful for doing it?” The other view is: “This is great work! Whoo-hoo! We get to grow people every day when we come to work.” And that’s the kind of optimistic, culture-change orientation that you really want to see.

Some adult children say they reach the point where they can no longer see a parent who is just a “husk” of their former self — the essence of that person is gone. You say that even the frailest and most demented elderly person can grow. How do you see that happen?

This is an advanced concept, but, hey, your readers are dealing with advanced situations. The easy kind of love is the love that we have for and with people who know us and return that love to us in full in ways that we can easily understand. Classic examples would be brother and sister or father and son, where it’s a two-way street. The level of love and compassion that is above that — that’s higher than that — is love for a person who, by all appearances, is giving you nothing in return.

So someone says, “I go to see my mom, she doesn’t know my name. I hold her hand, she doesn’t hold my hand back. I talk to her, she doesn’t speak to me.” There are a lot of people dealing with that, and here’s a way to make sense out of it: Your mom is giving you a chance to take it to the next level, to give love simply and purely on the basis of love and compassion, not on the basis of asking, “what am I getting back out of this?” It’s an advanced spiritual practice.

Part of the reason why “elderhood,” or old age, exists is to help lead us toward this advanced kind of spiritual understanding. I have compassion for people who are facing a mother or father who doesn’t recognize them anymore — that’s pretty tough — and of course I’ve seen it as a geriatrician for years. But there’s still more to learn and your parent can still teach you. It’s just different. And that takes some getting used to.

Did your daughters influence your thinking on that?

In fact, my girls, Haleigh and Hannah, are not able to speak or sit up or see or move voluntarily. So I’ve learned how to have a loving relationship with them even though their situation in life is that they can’t say my name or communicate with me. The way they live is very, very similar to the way that a person in the advanced stages of Alzheimer’s lives — they are incontinent, they have to be fed, they’re not able to be social in the way we think of it. So my wife and I like to think of them as very advanced teachers. I wrote a book about that called In the Arms of Elders, in which Haleigh and Hannah play the roles of old women who become the teachers of my wife and me.

What was your biggest surprise when you and your wife became their caregivers?

I never understood what a huge difference there is between being a medical doctor and being a caregiver. Four years of college, four years of medical school, and three years of residency did nothing to prepare me as a caregiver! I’m very well trained as a doctor, but as a family caregiver, I started off with everybody else. So it’s amazing how little preparation we take with us into this very important work.

You say every elder should get to live in a garden. Can you elaborate on that?

At the Eden Alternative, we find that metaphor to be so rich and useful. The first, ideal human environment was a garden, so when we have an opportunity not just to create a facility for frail elders but to make a world in which they will live, shouldn’t we follow the best examples we have on hand? There is no spiritual tradition that says that the ideal living environment is a bureaucratic institution. No ancient wisdom leads us in that direction.

So when you talk about living in a garden, do you literally mean having a garden on the premises?

Here’s what I mean: being surrounded by life. When you walk into a garden, isn’t that the sense you have? That you’re surrounded by life? And it’s carefully cultivated life. If we were doing word association and I said, “nursing home,” you should say, “a garden of carefully cultivated life.” Of course, that’s not what would happen. We don’t have a situation like that. But we’re going to change it.

One of your ideas to improve the nursing home where you worked was to have a parakeet for every resident.

Yeah, for people who would want one. Let me tell you the idea behind that. Human beings need companionship, to have a companion in your life on an everyday basis, who is always there for you and is always part of your life. That is a very valuable and precious thing. If you say, especially to frail older people, “We’re going to take you away from your house, we’re going to take you away from your family, we’re going to take you away from your neighborhood, we’re going to take you away from your congregation,” then what are you going to offer them in return? Mainly therapeutic medical and nursing contact. What I said is, “I know that the people living here have suffered all these losses. Here’s one small thing we can do to help balance the scales.”

How do Green Houses treat staff differently?

First off, the people who work with the elders in the Green Houses are called shahbazim. The shahbazim — which comes from a Persian word meaning “royal falcon” — are what we call the midwives of elderhood. And here’s the key: They work together as a team in a house and they are not part of the nursing department. The nurses are separate. So one thing we’ve done away with is the nursing assistant idea where, if you can’t get a real nurse, you get a nursing assistant. We say that real hands-on care is so important and valuable that it has its own professional standing. And then the nurses, of course, also contribute a huge amount to the well-being of the elders. But the nurses and the shahbazim are partners, not bosses and workers.

Are long-term care residencies really necessary, or would it be better for people to take care of their parents at home?

There are nursing homes all around the world because there are millions and millions of people who need more care than their families can give them. As a geriatrician and a doctor, I have seen people go too far in care giving at home before they sought professional help much more often than I have seen people not go far enough. Many, many more people give up careers, income, job satisfaction, social life, their hobbies –give up so much to care for somebody they love at home. And I’ve seen that take a real toll on people’s personal health and well-being.

So the issue I most often deal with is helping family caregivers realize: You’ve done more than anybody could ever expect you to do, and now it’s time to bring in the professionals. And there’s nothing wrong with that — you’ve done what you can do. It’s time to take the next step. Yet society layers on the guilt, and I don’t approve of that.

My message to caregivers is: Don’t give yourself over to guilt. The very fact that you’re a reader at Caring.com — that’s like angel points in advance! So do the best you can, and when it’s time to get more help, don’t beat yourself up.
Can you describe Eden at Home?

Yeah! The whole idea is to take all that stuff we’ve learned in long-term care and make it available to family caregivers at home because, as I was saying before, even if you’ve got an M.D. from Harvard, you’re not prepared. So it takes Eden philosophy and Eden messages and puts them into the hands of people who are caring for somebody they love at home.

What’s an example of something from the Eden philosophy that caregivers can integrate into their lives?
We teach people how to go beyond care giving. There’s this idea, which is very common in our culture, that care giving is a “pair” relationship: a caregiver and the person getting cared for. It’s a one-on-one relationship and other people help, if they can. And that’s actually not the way care has been given in most of human history, when care needs were distributed across a clan or tribe or family network.

So we try to help people build “care partner networks,” so that the elder is a part of that care partner network, along with maybe a daughter, and maybe a friend from church. We help teach people that one of the most important things you can do as a care partner is to help grow the network, so that you have more people lending a hand, and that is healthier for the elder and the care partner.

Where can people read about the Eden at Home concepts?

At the Eden Alternative website, and there are also trainings people can go to. We’re working on making them available in more parts of the country.

Your philosophy is that changing the way we feel about and care for elderly people helps improve life for everybody else. How?

Over the last 300 years, our society has forgotten many things, and it’s changed in many ways. One of the things we’ve lost sight of is the pure value of relationships. We live in a time and a culture and a society where we go faster and faster and faster, and it’s about more and more and more, and better and better and better, and busier and busier and busier. If we take the time to stop and and listen and pay attention, elders can teach us to bring greater balance into our lives. So in a sense, the missing ingredient in this fever of adulthood that we have in our society, this more-better-faster fever, is the voice of the elder.

So often care giving is described as some kind of saintly compassion. Well, guess what? We need our elders — we need what they have to teach us; we need their guidance. Our children are “growing up faster” — they’re “adultified” at younger ages — because we’re missing the voice of the elder. It’s a big thing, and it’s about doing the right thing for society, not just being compassionate for that old person.

How were you inspired to begin this work?
I was medical director in a nursing home and I was asked to see a patient, a very old woman who had a rash on her arm. I went to see her and diagnosed her rash and told her I was going to make it all better. But before I left the room, she took a hold of my arm and pulled me down over the bed and looked right up into my eyes and said, “I’m so lonely.”

I realized then that I was running around treating skin rashes while the people I was caring for were dying of loneliness. And that was not an acceptable state of affairs.