Last September, my husband and I moved from Norfolk, our home of over 10 years, to Arlington. We loved our community in Norfolk. There were our friends and neighbors, who were very much a part of our daily lives. The neighborhood in which we lived was tight-knit and inclusive. People knew me. When you passed someone on the sidewalk you always said “hello” and they said “hello” back. You would recognize people in the grocery store. When our house was struck by lightning, and the fire trucks arrived, multiple neighbors came running to make sure we were okay (they were particularly concerned that Blue the Elder dog was safe). There was a sense of community pride. We were involved in a number of community groups. I knew the people who were homeless. And they were a part of the community. We belonged to each other.
In Arlington we live in a lovely home and a lovely neighborhood with lovely people.
Last month we returned to Norfolk for a vacation. We rented a beach house so we could enjoy the Chesapeake Bay and made regular visits to our old neighborhood to see our friends. It was wonderful, and it felt like home. Yet, it wasn’t home anymore. We loved being there, and it was so comfortable, yet it was also bittersweet. Because we didn’t live there anymore.
This perplexed me. I didn’t feel like I belonged there anymore. And I don’t feel like I belong in Arlington either. I feel… homeless.So, being a Revisionary Gerontologist, it got me thinking. A large part of my work with nursing homes and assisted living communities has been exploring how to create home and community for people living in long-term care. This is a fundamental aspect of culture change.
“Culture change” is the common name given to the national movement for the transformation of older adult services, based on person-directed values and practices where the voices of elders and those working most closely with them are solicited, respected, and honored. Core person-directed values are relationship, choice, dignity, respect, self-determination, and purposeful living. (From Pioneer Network, http://www.pioneernetwork.net)
A key goal of culture change is for elders to feel “at home” wherever they live.
Yet, how often, and how much, do elders in nursing homes and other types of care communities feel that they do not belong? That they are homeless?
The comparison of living in a nursing home with feeling homeless is not a new idea. Judith Carboni published an article called “Homelessness Among the Institutionalized Elderly” in the Journal of Gerontological Nursing in 1990. Yes, you read that correctly. 1990. We have been talking about this, and working on this, for at least 28 years. And, unfortunately, this article is as relevant today as it was 28 years ago.
Based on her literature review, observations, and interviews Ms. Carboni suggested that people living in nursing homes experience feelings of homelessness, even though they are “sheltered”. It is important to note that homelessness is more than not feeling “at home”. It is an emotionally “painful experience that brings about deep, existential despair”.
She observed, “The closer individuals move to the state of homelessness, the less able they are to find meaning in the experience and consequently become more disorganized and confused… Because individuals are no longer able to integrate experiences and form them into meaningful wholes, they are left adrift in a strange and frightening world without meaning.”This experience of homelessness evokes “meanings of non-personhood, disconnectedness, no journey, no boundaries, powerlessness/dependence, insecurity/ uncertainty, and meaningless space”.
There are several things that are very interesting, and devastatingly sad, about these findings. Clearly it brings to light how incredibly detrimental feelings of homelessness might be to individuals living in nursing homes. And we likely are not paying attention to it.
There are all sorts of outcomes we measure in nursing homes to evaluate quality of care and life. However, I do not think we really give due diligence to how many people are experiencing non-personhood, disconnectedness, no journey, no boundaries, powerlessness/dependence, insecurity/uncertainty, and meaningless space. What would this look like? It makes me wonder about elders I have seen in nursing homes who seem to be “settling in just fine” because they are not voicing complaints, sadness, or loneliness. But are they feeling homeless?
Interestingly, Ms. Carboni found that a key coping strategy for elders living in nursing homes was what she called “pretending”. What does pretending look like?
- Living in the past – in their minds, returning to where they have felt at home in the past
- Keeping the secret – outwardly acknowledging this is their home, but inside denying this is their home
- Distancing – not getting involved with other elders to avoid seeing other people’s sense of homelessness that mirrors and reinforces their own homelessness
- Surrendering – Giving up and feeling there is no choice – “what can I do?
Are elders “settling in just fine”? Or, are they great pretenders?
Another thing I find interesting is that a result of homelessness is disorganization and confusion. While we might (misguidedly) attribute disorganization and confusion to being old, or having dementia, how much of this is related to feelings of homelessness? Even more concerning is this ongoing theme in which people living in nursing homes, who feel homeless, who do not feel they belong, lack meaning. That might be the case in spite of the many well-intentioned ways we attempt to provide opportunities for engagement (in other words, recreational programs, visiting, socializing, etc.). Perhaps this is because we do not always know what is important to people. Or we make assumptions about what people need or what is best for them. It is important to note that “belonging” means many different things for people, and it is not always about social connections. For some people, they can feel that they belong, yet be by themselves, happily reading a book. This gives them meaning.
To take that a step further, if you are living in a nursing home, and are feeling homeless and lack meaning, how might you act? Maybe you would try to leave. Maybe you would stay in your room. Maybe you would allow yourself to be conditioned by the routines around you, because they don’t really mean anything to you anyway.When we compare living in a nursing home to homelessness, and really understand the lived experience of homelessness, we see that homelessness is not as much tied to having a physical place to live as it is to the meaning we assign to where we live. In other words, you can live in a lovely home (like me), or a beautiful nursing home, assisted living community, or 55+ community, and still feel homeless.
There is also the great likelihood that feelings of homelessness are not just experienced by elders in nursing homes. Maybe people growing older or growing with dementia feel this way regardless of where they live – maybe they feel like they don’t belong in our society.I see these themes – not belonging, not being seen – quite frequently, in nursing homes and assisted living, and in our own neighborhoods. Quite honestly, I see them so often that they are the norm. We have got to do better. But how.
Perhaps one way to consider this is to think less about the problems (e.g. time, money, resources, regulations, etc.), and think more about the possibilities. Because this, in fact, is about building community.
Peter Block, in one of my favorite books, “Community: The Structure of Belonging” says:
“Community as used here is about the experience of belonging. We are in community each time we find a place where we belong. The word belong has two meanings. First and foremost, to belong is to be related to and a part of something. It is membership, the experience of being at home in the broadest sense of the phrase. It is the opposite of thinking that wherever I am, I would be better off somewhere else. The opposite of belonging is to feel isolated and always (all ways) on the margin, an outsider. To belong is to know, even in the middle of the night, that I am among friends.”
How can we facilitate creating communities where elders and people living with dementia feel they BELONG?
How can we create communities where people feel they are a PART OF SOMETHING?
How can we create communities in which elders and people living with dementia KNOW THEY ARE AMONG FRIENDS?
Instead of building homes in which people feel homeless, let’s build communities where people belong, are a part of something, and know they are amongst friends. I have felt these things in a community. And I hope you have too. It is possible. Let’s make it possible for people growing older or growing with dementia. Because we are not building communities for THEM. We are building OUR community, in which we all live.