By Aurora DeMarco
“The problems of aging present an opportunity to rethink our social and personal lives in order to ensure the dignity and welfare of each individual.” —Daisaku Ikeda
Every eight seconds, another baby boomer turns 65. Seven in 10 of us will need home care assistance at some point in our lives, due to disability or the simple process of getting older. Much of the time this reality is described in negative terms; the sentiment is “what a burden to society this will pose.” However, this situation can offer a great opportunity to once again advance the idea of communal living. Baby boomers spawned many social change movements that shifted our thinking on issues of personal freedom and choosing alternatives to the traditional nuclear family. Boomers may also be the generation to lead the way for changes in how we age in our society.
According to Caring Across Generations, a national advocacy organization to improve elder care in this country, we need to develop a comprehensive plan to make sure that we all age in dignity and are cared for. Currently, elder care is geared to those people who live in traditional families where there is a spouse and/or children who can provide and care for their sick and elderly loved ones. Often paid home health aides care for the sick and elderly in home-based care. Many also end up in institutional-based care settings such as assisted living or retirement homes or hospitals. Unlike the spirit of connectedness and caring of intentional communities, these institutions often strip seniors of their rights to self-determination and governance. Many arrive there as a last resort, frail and no longer able to provide their self-care needs. Many do not want to burden their family members and some have no family members at all.
Intentional communities offer an alternative to the isolation and loneliness that many seniors experience as they age and need more assistance. With fewer and fewer people coming from traditional families, now is the time to reinforce that intentional communities can be an antidote to social isolation and loneliness.
Fortunately there are existing models, like kommune-niederkaufungen, which generates income with its elder care worker collective (www.kommune-niederkaufungen.de/english-informations), and the Fellowship Community, whose elder “members” contribute about 35 percent of the community’s income in the form of different fees (www.fellowshipcommunity.org/our-elder-members.html). Furthermore, existing communities are carving their own paths towards care as members age and need care. My daughter is part of the care team for the elderly and disabled in her intentional community, which has built a separate building that offers care from birth to hospice when their members need it. Moreover, new communities are forming with the intention of offering elder care to their members.
At the 2014 Twin Oaks Communities Conference a group of us met to discuss how to provide elder and hospice care in intentional communities. We created a list of ideas for helping existing communities and for advancing the idea of intentional communities as a new model for senior living. It is by no means comprehensive, but rather a beginning of a much larger conversation about providing elder care in intentional communities.
1. Encourage communards to have advanced directives and co-caring agreements in case communards need elder/hospice care. These directives/agreements can help avoid conflict later on. This may be especially true for those who have families who may disagree with their choices. Many people have chosen to live in community because they have different values and lifestyle preferences than their family of origin or family of procreation. Advanced directives and co-caring agreements give individuals the opportunity to spell out clearly their wishes on medical interventions and how they wish to be cared for. One communard’s son called the police on her when she notified him of her choice of voluntary starvation and dehydration to expedite her dying process—a legal practice which does not contribute to suffering among the dying and might actually contribute to a comfortable passage from life. Having her wishes put in writing and shared with her family members might have helped her family members understand and respect her choice to die as she wanted.
2. Put together a work exchange for people wanting to visit communities in exchange for helping to care for disabled/elderly communards. Volunteering time in exchange for room and board is a good way to travel inexpensively. Living in community offers opportunities to explore different regions, socialize, and be of service. Being part of a care team is one way to volunteer and could be a way for communities to have their labor needs met. Many people want to put their big toe in the intentional community waters and this may offer a clear way to volunteer and be of service, while also experiencing communal living.
3. Develop an exchange program with other communities who can send caregivers to help with hospice care/elder care when communities are in need. Often various communities send help to fellow communities when there is a need. One communard spoke about his wife’s end-of-life care. She was a beloved member of the intentional communities movement and when she needed end-of-life care a few members traveled from their home communities to assist her. This is a great way for communities to support one another.
4. Reach out to networks of retired nurses who may want to still practice nursing in the more pleasant settings that communities offer as opposed to the harsh conditions of institutional-based care. Most nurses I speak with say they love nursing, but dislike their workplace environments. In the community I live in, a long-term community member who is in her 90s is cared for by three home health aides. All three women are valued members of the community and enjoy the openness, kindness, and caring that my community is especially known for. During our Thanksgiving celebration a special word of gratitude was given to these hardworking caregivers.
5. Be aware that hospice is always paid for through Medicare, Medicaid, private insurance plans, and charity pools. Hospice care includes four hours a day of a professional home health aide, as well as the help of physician, nurse, social work, pastoral care, the training of nonprofessional caregivers, and pain relief, as needed. When I have traveled to intentional communities to talk about elder care, I am shocked at how many people are not aware that hospice is paid for and that it is an option that most people don’t know they have.
The beauty of aging is that it can be a time of life where the demands of work and family are behind you. Yet culturally people still follow a paradigm that may not work for them. Rather than retirement being a time of exploration and connectedness, many seniors feel depressed as a result of feeling unproductive, isolated, and uncared for. Many of these issues are explored further in the article “Communities and Old Age: Opportunities and Challenges for People over 50” by Maria Brenton (see www.ic.org/wiki/communities-old-age-opportunities-challenges-people-50). I would like to end with a quote from this article, because it captures the spirit that needs to be harnessed so that people over 50 can create communities that work for them:
“Being part of an intentional community in old age is a way to challenge the isolation and social exclusion that many older people experience in our youth-oriented western societies. Living in an intentional community is a way to maintain personal autonomy as well as add an active, vibrant, companionable dimension to one’s later life. While group living is not everyone’s cup of tea, if you are interested in it don’t wait until you are really old to explore the available options. Anticipate and take action to join or start such communities while you have plenty of drive and energy for new opportunities, challenges, excitement, and personal growth. Don’t wait for the future to be decided for you. Shape it for yourself. There are other people out there with whom you can share the experience.”
Aurora DeMarco has over 30 years of community organizing experience. She has written and published on various topics including health care, child care, migrant workers, parenting, women’s issues, and cyberbullying. She has worked with senior advocates pushing for Health Care for All and was successful in getting a single-payer bill through the New York State Assembly. Aurora is a Licensed Massage Therapist with a specialty in working with Trauma Survivors. She has worked as a Grief Counselor for Hospice of New York, and developed and presented workshops on working with trauma survivors in hospice settings. She most recently facilitated a workshop on providing elder and hospice care in intentional communities. She lives at Ganas, an intentional community on Staten Island, New York and is working with Point A, a collective dedicated to building more intentional income-sharing, egalitarian urban communities.
Excerpted from the Spring 2015 edition of Communities (#166), “Community for Baby Boomers.”