Recently, I had the privilege of participating in a small conference on Palliative Care convened by the Center for Practical Bioethics (https://www.practicalbioethics.org/) with support from Kathy Greenlee, head of the Administration on Community Living and Asst. Secretary (HHS) of the Administration on Aging. The presentations were outstanding and gave me some new insights into the role of the health care system in communities for a lifetime. I was under the false impression that palliative care was all about end of life care when, in fact, it’s about quality of life, whether one is near death or not. While most participants came from the fields of medicine, I was invited to offer a “community” perspective on the issues. I would like to share my comments with the Phil’s Adventure audience, and solicit yours in return.
Being and Dwelling
In praise of occupational therapists
In the final days of his life, unable to dictate and suffering from immense pain of throat cancer, U.S. Grant scribbled a few final thoughts…
“I do not sleep though I sometimes doze a little. If up I am talked to and in my efforts to answer cause pain. The fact is I think I am a verb instead of a personal pronoun. A verb is anything that signifies to be; to do; or to suffer. I signify all three.”
I find the quote evocative for its relevance to an understanding of the concept of home in the lifeworld of elders. In short, if home is in any way an object, its meaning only derives from use. Hence, as outsiders, we must pay constant attention to movement in the lifeworld of elders, which is a challenge to our stereotypical view of old age as a period of stasis and rest.
Consider this beautiful passage from Wendell Berry’s The Memory of Old Jack, its description of the old farmer Jack Beechum and the identity between self and environment that is created by movement.
He had known no other place. From babyhood he had moved in the openings and foldings of the old farm as familiarly as he moved inside his clothes … Now when he walked in his fields and pastures and woodlands he was tramping into his mind the shape of the land, his thought becoming indistinguishable from it, so that when he came to die, his intelligence would subside into it like his own spirit.
When I was Director of Senior Health services at an Indiana hospital, we often asked seniors “What do you want the health care system to do for you?” Invariably, the answer would be…”to help me manage at home as long as I can”, what Marian Barnes calls “being well enough.” Seniors saw the concepts of health and home as an identity, one unrecognized by both the health care and the housing systems I would add.
With this in mind, we undertook ethnographic research on the meaning of home for older adults in our community. A deep map of home emerged, organized around several basic elements.
First, home is a complex concept, far more significant than “house.” In our research we encountered individuals who have lived in the same house for over 75 years! It requires a virtual archaeology of memory to peel back the deep sediments of meaning of a life in such a place. These memories, good and bad, are codified in the physical contents of the place. As she walks through the house the tenant walks through her life. Photos, furniture stains, knick knacks, postcards, window vistas, even dents in the woodwork signify and embody important events and individuals in her life. How could she be expected to easily leave behind the door jamb marked by a pencil with the advancing height of her children and grandchildren?
Home is a physical support. Over time, home and body coalesce, a hand in glove. We can walk through our home with our eyes closed because we maintain its physical representation within our body. This is very comforting. Managing the home (sometimes trivialized as homemaking) anchors daily life, provides markers for our temporal experience, and provides cues and incentives to keep our body and mind active.
Home is a social base. When you are home, it’s your territory, your turf. You control who enters. When you are home you are at the node of a social network of friends, neighbors and family, where well-being is not an individual state but is generated through relationships. As Berry says, in another essay, “Community is the smallest unit of health.”
Home is an aesthetic. You design its appearance for self-satisfaction and display to others. The aesthetic reflects your own sense of self just as importantly as does your clothing and your car.
With all these things in play, the home becomes a mirror for the self. It represents you to yourself and, as such, provides a constant reminder of your uniqueness and contributions to your family, your neighborhood, your community. Is it any wonder why someone would want to stay put?
Understanding the lifeworld of older persons from the inside is an essential starting point for design, whether of environments or of services. This requires close observation and deep listening. Psychiatrist Robert Coles, trained by physician poet William Carlos Williams, spent some time with Nellie Benoit, over 90 years of age, in preparation for his book Old and On Their Own .
Nellie reports that they say she’s legally blind with glaucoma and “all I can see is ‘forms’ or ‘outlines’ of objects. But I say (to myself) that they are way, way off track. I can see a whole lifetime of scenes, people and places, all the details, in black and white and in color, even if their medical instruments say I can’t!”
For Nellie, the sun is her daily companion. “…without the sun, the whole planet would die… so when I can catch sight of that light, creeping in here, I talk to it, I say ‘Welcome and please make yourself at home… I say I know you’ve got other folks to visit, and I don’t want to get possessive, and try to hoard all your treasure, and not share it with others – but it’s so nice to have you here and I’d like you to know that.” …Now after a while, I can feel the sun getting ready to leave. Things will cool down! Things get darker! I’ll start gabbing again. I’ll talk to that fading light; it gets dimmer, saying good-bye, and I feel my heart sinking. But I try to be cheerful, and express my gratitude: ‘Thank you ever so much’, I say. ‘So long and I hope and pray I’ll be here, and see you tomorrow’. I say, ‘You’ve been kind, to visit us, and I sure wish you a safe and sound trip.’ I say. ‘What joy you’ve brought us, and we are all so grateful, ‘ I say.”
Though Nellie herself moves only so slowly through her house, she participates in a daily round and shares a path with the sun. In fact, home is the path.
Among philosophers, Martin Heidegger has spoken extensively about the identification of self and place, of dwelling and thinking. He notes that the etymological history of the word dwelling, bauen, in German, means to build, but has as its cognate the word bin, as in ich bin, I am, du bist, you are, the imperative form bis, to be:
What then does ich bin mean? The old word bauen, to which the bin belongs, answers: ich bin, du bist mean: I dwell, you dwell. The way in which you are and I am, the manner in which we humans are on the earth, is Buan, dwelling. To be human … means to dwell (1971, 147).
He proceeds to elaborate on the old definition of home to mean to remain, to stay in a place and compares it to the Old Saxon woun, which also means to be at peace. Hence, the word home comes to mean retreat, a place of safety and security – dwelling as a noun, not verb. Heidegger misses the possibility of home as path, so beautifully enacted by Nellie.
If being and dwelling are identities, and if home and travel are not antithetical, it follows that achieving a sense of place in old age does not require “aging in place”, in its narrow sense of aging in the house. Aging with a sense of place can be accomplished in many ways. The question is not whether staying put or relocating south is the right solution. The question is… can we fill our spaces with meaning and memory? Can we attain a sense of agency, where what we do makes a difference? Can we dwell in the other? Can we transform space into a place that reflects who we imagine ourselves to be? This is why the occupational therapist, working exclusively at the fulcrum of home and health, may be the most important member of the palliative care team.
In the end, we return to the starting point – home is a verb, not a noun. Home is created by going in and out of the circles of life that surround us. I have found no better definition of this premise than one provided by a poetry group of Adult Day Care participants with dementia:
I have several homes
I know a home is a home when I can
And go out again.
Home is where the dog goes
When it gets too cold to roam
When winter’s coming on
That’s when I want to go
Phil Stafford, Ph.D., is a cultural anthropologist and Director of the Center on Aging and Community at the Indiana Institute on Disability and Community, Indiana University, Bloomington, IN. firstname.lastname@example.org. He blogs at Phil’s Adventures in Elderburbia: http://agingindiana.wordpress.com/
References and readings on the meaning of home: a brief list
Bachelard, Gaston. 1994. (trans.) The Poetics of Space. Boston: Beacon.
Barnes, Marian, Taylor, D and Ward, L (2013) ‘Being well enough in old age’, Critical Social Policy, vol.
33, no. 3, 473-493.
Berry, Wendell. 1974. The Memory of Old Jack. San Diego: Harcourt Brace.
___1995. Health is Membership, in Another Turn of the Crank. New York: Counterpoint
Csikszentmihaly, Mihaly, and Eugene Rochberg-Halton. 1981. The Meaning of Things: Domestic Symbols and the Self. Cambridge: Cambridge University Press.
Coles, Robert. 1997. Old and on Their Own. With photographs by Alex Harris and Thomas Roma. New York: Norton.
Ekerdt, David K. and Julie F. Sargent. 2006. Family Things: Attending the household disbandment of older adults. Journal of Aging Studies 20: 193-205.
Gubrium, Jaber. 1993. Speaking of Life: Horizons of Meaning for Nursing Home Residents. New York: Aldine de Gruyter.
Gubrium, Jaber F. and Andrea Sankar, eds. 1990. The Home Care Experience: Ethnography and Policy.
Newbury Park: Sage.
Heidegger,M. 1971 (orig. 1927). Building, Dwelling, Thinking. In Poetry, language, thought. A. Hofstadter, (trans.).New York: Harper and Row.
Jackson, Michael. 1995. At Home in the World. Durham, N.C.: Duke University Press.
Korosec-Serfaty, Perla 1985. Experience and Use of the Dwelling. In Home Environments. Irwin
Altman and Carol M. Werner, eds., New York: Plenum Press.
Marcus, Claire Cooper. 1995. House as a Mirror of Self: Exploring the Deeper Meaning of Home. Berkeley: Conari Press.
Sanders, Scott Russell. 1993. Staying Put: Making a Home in a Restless World. Boston: Beacon.
Snyder, Gary. 1990. The Practice of the Wild. San Francisco: North Point Press.
Stafford, Philip B. 2001. When Community Planning Becomes Community Building: Place-Based Activism and the Creation of Good Places to Grow Old. In L.F. Heumann, M.E. McCall, D.P. Boldy, eds., Empowering Frail Elderly People. Wesport, CT: Praeger.
___2003. Homebodies: Voices of Place in a North American Community”. In Gray Areas: Ethnographic Encounters with Nursing Home Culture., Philip B. Stafford, ed., Santa Fe: SAR Press.
___2009. Aging in the Hood: Creating and Sustaining Elder Friendly Environments. In The Cultural Context of Aging: Worldwide Perspectives. Jay Sokolovsky, ed., Westport:
___2009. Living Large while Living Small: The Spatial Life of Aging Boomers. In Boomer Bust? Economic and Political Issues of the Graying Society. Robert B. Hudson, ed., Westport: Praeger.
___2009. Elderburbia: Aging with a Sense of Place in America. Santa Barbara: ABC-Clio.
Tuan, Yi-Fu. 1977. Space and Place: The Perspective of Experience. Minneapolis: University of Minnesota Press.