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Parenting Our Parents
Finding Progressive End-of-Life Solutions
by Wendy Priesnitz
My mother used to take care of me. Now the tables have turned and the child is parenting the parent. Watching a parent succumb to end-of-life issues can be painful. It can also be overwhelming, especially for those of us who have spent our adult lives espousing values around community, non-violence, de-institutionalization, and so on.
In fact, the prospect of moving my 96-year-old mother into a long-term care home has made me question many aspects of both my values and the way our society treats its elders. A long-term care home can be the ultimate in assembly line living, relegating a person to a thing in storage, which we hope wouldn’t need too much attention until it’s time to bury the body. Isn’t it ironic that as we are living longer, we are often forced to surrender freedom and control in order to get the support and services we need. Society views aging as a process of diminishment, so elders enter a new phase of living in a world that is often uninterested in them as individuals and unreceptive to their unique gifts and needs. News outlets regularly document case of elder abuse and seemingly callous, under-funded, over-corporatized care models. Women and the poor seem to be the main victims of our elder care system, which separates the generations from each other and results in loss of control, loss of choice and isolation.
The average nursing home is based upon a medical model, where residents are seen as ill and dependent, where professional staff members provide treatment and where daily life revolves around administrative needs rather than those of the residents. In effect, residents become known by their diagnoses and elderly foibles, rather than their unique personalities, and are offered a half-hearted menu of structured activities.
One nursing home aide has called these facilities outmoded zoos. Thomas Edward Gass felt drawn to serve the elderly after caring for his mother at the end of her life. And he wrote a book about the experience called Nobody’s Home, which described his minimum-wage job at a facility that grossed three million dollars annually. He wrote, “Residents are kept in small rooms, emotionally isolated. Occasionally they are visited by family members who reach through the bars and offer them treats. Aides keep their bodies clean and presentable… we invest huge amounts of money to maintain the body while leaving the person to languish, cut off from all they love.”
However, transformative change is happening in respect to how we care for the oldest and most vulnerable members of society. A few pioneering individuals and organizations are trying to change the values, practices and culture of elder care.
At the forefront of this change movement is the Pioneer Network, which began as an informal group of American nursing home reformers who began meeting in 1997 to define common areas of endeavor and opportunities for research. In 2000, they expanded their vision beyond the walls of nursing homes to envision a culture of aging that is life-affirming and humane wherever seniors live – in their own or extended families’ homes or in assisted care facilities. These pioneers are trying to re-establish the definition of “home” by joining forces with their staffs, residents and families to create facilities that value resident-centered life and care, and where the needs of the residents take precedence over those of the institution.
These facilities become real homes for their residents, with house pets, vegetable and flower gardens, recreational and cultural activities based on their interests, neighborhood children and adults a part of daily life. In these communities, residents have control over their daily lives. Direct caregivers are empowered to facilitate that control and help to provide for residents’ needs – social and personal as well as medical.
One of the leaders of the movement is the Live Oak Living Center, a small elder care facility in El Sobrante, California. It was founded in 1986 by Barry Barkan and his wife Debby, who are also among the founders of the Pioneer Network. The Live Oak Center attempts to infuse the nursing home environment with “normal life”, so that it is normal life, rather than a holding tank prior to death. They don’t separate people according to illness or infirmity. Staff members are encouraged to bring their kids to work, resulting in a constant presence of young people at the home. Another of the hallmarks of the home’s method of operation is the daily community meeting. Says Barkan, “It lasts for one hour every day. We introduce new people, tell jokes, exercise, talk about how everyone is, talk about the home and talk about the news. Everything that’s going on in the world is a topic of discussion. New staff members come and introduce themselves, and it’s an instant orientation for them that there’s something different happening here from the last place where they worked.”
In the same way that I experienced the consciousness-raising of the women’s movement back in the 1970s, Barkan and his colleagues are challenging the stereotypes. This time, though, they are about old age. His definition of an elder is: “a person who is still growing, still learning, still with potential and whose life continues to have within it promise for and connection to the future.” To Barkan, an elder deserves respect and honor, rather than warehousing. In turn, he believes that elder has a role to synthesize wisdom from lifelong experience and formulate it into a legacy for future generations.
This vigorous sharing among the generations is also a hallmark of The Eden Alternative, a social movement that is changing the culture and nature of life in long term care for millions of people in the United States, Canada, Europe and Australia. The Eden process works to eliminate loneliness, helplessness and boredom by transforming facilities into vibrant habitats for human beings rather than institutions for the frail and elderly. Like the Live Oak Living Center, homes certified by The Eden Alternative attempt to be elder-centered communities committing to creating an environment where life revolves around close and continuing contact with plants, animals and children.
That is the sort of environment where I’d like to live as the end of my life on this planet approaches. And an overwhelming number of British social care and health professionals polled in a survey agreed with me. The U.K.’s Department of Health study entitled Independence, Well-being and Choice found that almost 90 percent of respondents said they would prefer to be looked after at home. Of those who did want to leave, staying independent was seen as vital, with 88 percent opting to live in either a retirement village. Just nine percent were looking forward to seeing their days out in residential care.
A significantly large number of the respondents were either owners of care homes or headed social care services.
One of the things I’ve learned as I have struggled with the quality of life issues for my mother is that no one person can be totally responsible for the care of an elderly person. It is the responsibility of each of us to see that all elderly people receive good, appropriate care and are able to die with ease and dignity. My experience has also shown me that my generation needs to begin now to create the type of environment we’d like to have when our time comes. Just as it takes a village to raise a child, so it takes a village to care for the elderly.
Wendy Priesnitz is the Editor of Natural Life Magazine and a journalist with over 40 years of experience. She has also authored 13 books.
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