When Our Friends in Community Need Long-term Care

By Martha Stettinius

Imagine…living in a home you love…in a neighborhood you love…throughout your growing older years. From go-go healthy aging through the Deep Aging™ years when need and frailty could dictate a move to a nursing home…imagine instead living in the bosom of your community. Is that possible?

The author with her mom, Judy, in a nursing home.

The author with her mom, Judy, in a nursing home.

Having helped care for aging parents, many boomers and Gen Xers are drawn to cohousing as a way to age not “in place” but “in community.” In fact, quite a few older, retired visitors to EcoVillage Ithaca (EVI) say that they’d love to move here “at some point” but that they are “not quite ready.” Their comments imply that they see cohousing as an alternative to assisted living or even nursing home care.

Is that view realistic? Have any cohousing communities truly found a solution to the need for long-term care? Certainly it’s painful to build intimate friendships with our neighbors over years or decades only to watch them need more assistance with day-to-day tasks from driving, cooking, and cleaning to “activities of daily living” such as bathing, dressing, walking, and transferring. If a resident cannot afford to hire enough help, or if they have a cognitive impairment that makes it difficult for them to coordinate care on their own, friends and neighbors can feel stress as well as compassion.

In May, two of us from EVI joined 250 attendees at the Cohousing Association of the United States’ annual conference “Aging Better, Together: The Power of Community,” the first US cohousing conference to look closely at questions of aging in community.  Deena Freed, one of the founding members of EVI’s first neighborhood (FRoG) and a founding member of our Community Health and Aging Team (CHAT), and I were hoping that in the bustling Salt Lake City conference center we would find “the answer.” About a quarter of the presentations and breakout sessions focused squarely on long-term and end-of life care. Surely, we thought, another cohousing community has already grappled with these issues and found the solution!

Alas, the bad news according to experts at the conference is that no cohousing community in the world has figured out a way to help every resident receive the care they need to age in their home as long as they want to. Even the first senior cohousing communities that started in the US 15 years ago, whose members are now mostly over the age of 70, have no answers. Some senior cohousing communities, for example, included “caregiver suites” in their common houses with the intention of hiring a caregiver to provide hands-on care, but no community has hired such a caregiver or created guidelines around hiring and supervising a caregiver. And many of us at EVI have found that when we try to provide co-care for more than one resident at a time, people can struggle with “compassion fatigue.” Coordinating care can be complex and emotionally fraught.

The good news is that cohousing communities are all starting to have the same conversations, and we are trying to figure it out together! An exciting development, for example, is the Aging in Community Collaboratory developed by Janice Blanchard, a gerontologist and an international expert in aging in community. According to the Collaboratory website, in the spring of 2016 “22 individuals representing 8 cohousing communities and several unaffiliated cohousing enthusiasts” came together at Takoma Village Cohousing in Washington, DC. They will continue to work together online and in person for a year to custom-design co-care programs for individual communities that uniquely address their particular cohousing circumstances. The Collaboratory (a combination of “collaboration” and “laboratory”) is sponsored by Mid Atlantic Cohousing and co-facilitated at Takoma by Ann Zabaldo, the co-presenter of Blanchard’s breakout sessions at the “Aging Better, Together” conference.

EVI’s CHAT may seek grant funding to allow several EVI residents from each of our 3 neighborhoods to join the Collaboratory for the next cycle. Participants in the Collaboratory are motivated by the following vision and question:

EcoVillage residents play with Earth Ball". Photo credit: Jim Bosjolie

EcoVillage residents play with Earth Ball. Photo credit: Jim Bosjolie

Imagine…living in a home you love…in a neighborhood you love…throughout your growing older years. From go-go healthy aging through the Deep Aging™ years when need and frailty could dictate a move to a nursing home…imagine instead living in the bosom of your community. Is that possible?

Blanchard pointed out that with 10,000 boomers in the US turning 70 every day, long-term care is the “elephant in the living room” in cohousing. Although she believes that “cohousing is the best model of aging in community,” she says that “where the rubber hits the road is when we move beyond the glow of ‘active, vibrant aging’ into the shadows of our ‘twilight years.’” Absolutely no one in cohousing, she says, is willing to serve as a nursing aide, to help their friends and neighbors with long-term hands-on care for activities of daily living. So how, she asks, will these needs be met—particularly for middle-income folks with limited resources?

Is cohousing—including senior cohousing—viable for elders only if they are active and healthy (or wealthy), or can it truly serve as a model of how an intentional community can support all stages of the life cycle? After all, 70% of Americans 65 and older today will need an average of 3 years of long-term care—and for women the average is 5 years. It’s highly unlikely that a cohousing resident will be out kayaking one day and then die in their sleep.

Friendship, Intimacy, and Long-term Care: In cohousing, the aging friend who gradually needs more help lives not across town but a few feet down the path. After eating dinner with him at common house meals for years, after going out to concerts with him and to the Friends of the Library sale, after visiting him in the hospital and sharing holiday dinners and going for walks, how can we then look the other way when he needs help with shopping or driving or cooking? Will we wince when, a few years later, he needs help with more hands-on care and may need our assistance to coordinate it? What if that friend is one of the 22% of elders who are “elder orphans” with no family members to watch out for them? Does the intimacy we’ve built through years of friendship end when it comes to the “twilight years” between active aging and death? As vulnerable, frail human beings, we need each other; interdependence, not independence, keeps us strong.

Income and Time:  Of course, much of long-term care comes down to resources—of money and time. Is aging in cohousing only for the upper middle-class with the financial resources to hire help? Or can cohousing serve as an alternative for those of us who are likely to have to “spend down” our savings and impoverish ourselves to qualify for Medicaid-funded nursing home care? How many residents have the time to help coordinate care or provide meals, transportation and other care needs for their neighbors? Many of us in multigenerational cohousing, for example, are “sandwich generation” caregivers already stressed by caring for both children and aging parents, or we work full-time.

Building Community Support for Long-term Care: Blanchard recommends that cohousing communities build partnerships with outside organizations (such as the Village-to-Village network) so we’re not trying to do everything on our own. We also need to create care committees in our cohousing communities to coordinate assistance and support caregivers—committees that are elected and valued by our whole communities. And we need to define what level of co-care (if any) we are willing to provide. As Blanchard says, “we don’t need perfect solutions—just solutions that are good enough to get us through.”

EVI Presentation:  Deena and I found Janice’s breakout sessions particularly helpful, but we took copious notes throughout the conference and interviewed multiple speakers and attendees. We then presented our notes at a presentation at EVI in June. Over 50 EcoVillagers and a dozen special guests interested in aging in community participated in this discussion, including representatives from Ithaca’s new Village-to-Village Network nonprofit Love Living at Home, the county Office for the Aging, The Eden Alternative, and Binghamton University.

Looking Ahead:  Presentations and conversations at the “Aging Better, Together” conference implied that more and more cohousing villages are starting to look at long-term care in community as what one panel member called “cohousing’s natural fruition.” In the meantime, EVI continues to grapple with the national conundrum of long-term care on a very local scale. Our Community Health and Aging Team has been up and running for 4 years, leading discussions around many issues related to long-term and end-of-life care, and coordinating care, mostly short-term, for a few residents, but we still have much work to do. Twenty-four percent of our 240 residents are age 60 or over, while a typical rate “outside” is approximately 13%. Thanks to the “Aging Better, Together” conference, we more fully understand the challenges ahead and look forward to learning from and building bridges with other cohousing groups and outside organizations. Together we can do what we cannot do alone!

***

To receive a copy of the EVI presentation about the cohousing conference “Aging Better, Together: The Power of Community,” email Martha at marthastett@gmail.com. Also, CHAT is seeking donations to cover the cost of Martha and Deena’s travel to the conference. Checks can be made out to Deena Freed and mailed to 110 Rachel Carson Way, Ithaca, NY  14950.  Thank you.

Martha Stettinius, Author

Martha Stettinius, Author

Martha Stettinius, who has lived at EcoVillage Ithaca with her husband and two children for 18 years and serves on the Community Health and Aging Team steering committee, is the author of the acclaimed book Inside the Dementia Epidemic: A Daughter’s Memoir.