How to Sit in Companionable Silence: An Interview with Lynn Casteel Harper, Author of ‘On Vanishing’

“We can begin to identify other ways to conceive of dementia apart from terror. The stigma isn’t simply inherent—so it doesn’t have to remain this way.”

In her book On Vanishing: Mortality, Dementia, and What It Means to Disappear, Lynn Casteel Harper beautifully weaves together historical accounts of dementia, her grandfather’s final years with the disease, and personal experiences as a nursing home chaplain with a rigorous examination of the philosophy, symbolism, and marketing behind this cognitive disease in order to question our preconceived notions of dementia and the people who live with it.

Harper envisions a future where the eldery and those with dementia don’t have to disappear from mainstream society, and instead of living in fear of the disease we can live in acceptance of it. So many of the ideas in On Vanishing are especially relevant now, in the age of the Covid-19 pandemic, as issues of ageism have come to the forefront of society and have been a contributing factor in mass deaths in nursing homes.

In March, I had the chance to correspond with Lynn about the pandemic, the language and symbolism of dementia, and how to put our fears aside to show up and be present for the eldery and those with dementia.

The conversation below has been edited for clarity.

Bailey Cook Dailey: Your book feels extremely relevant and timely now in the middle of the coronavirus pandemic, when nursing home deaths account for around 35 percent of Covid-19-related deaths in the United States. How does it feel to see so many of the issues you have written about become such an important national discussion?

Lynn Casteel Harper: I could have never imagined that my book about “what it means to disappear” would enter a world of mass disappearance, of so much death. The magnitude of the vanishing, the disproportionate dying of the very people I had written about, was—is—devastating.

I wrote On Vanishing because I sensed how dismissive and denigrating our dominant American culture is toward older people, especially those with dementia. And this didn’t square with my experiences with people with dementia as vibrant, gifted, whole—or with my faith tradition that’s supposed to lift up “the least of these.” I wanted to explore what drives the stigma around aging and dementia, which led me to question institutionalization, to ask why nursing facilities—segregated from the rest of the community—are deemed acceptable.

I pushed back against this dubious setup, but I had no idea how deadly these institutions would end up being. I’m a wreck over it. I’m also hopeful that the book can be a nudge joining other nudges in the push toward a gentler world in which to grow old. A world where one’s full membership in the human family does not hinge on meeting rigid standards of “health” or “competency.”

BCD: Due to these shocking numbers, do you think this pandemic can open up a new dialog on geriatric issues and dementia? Are you at all hopeful of any silver linings?

LCH: I hope the pandemic pushes the question of how do we all wish to age—that geriatric issues become framed much more broadly. What kind of communities do we want to live in across the lifespan? Do we want communities that work only insofar as we “work”—that is, insofar as we are not sick or disabled or have trouble thinking? (Which could occur at any point in life.) Or do we want communities inclusive of a broad range of folks, including those requiring the most care and support? I know I want the latter.

The headwinds are strong, because ageism, ableism, dementism are pretty entrenched in the American psyche. But I think there is a growing interest and urgency around these issues. The Biden administration seems serious about strengthening our care infrastructure. I am part of a group planning a national day of mourning to honor Covid-19-related nursing home deaths, an event that will springboard into advocacy for policy change. I just completed training, as part of a nationwide anti-ageism initiative, to reframe aging at communications and organizational levels in order to shift public perspectives and policies. I am a member of an international coalition of healthcare professionals, artists, activists, and others—that sprung up during the pandemic—who are saying now is the time to reimagine dementia in life-affirming ways.

A few weeks ago, I had the privilege of kicking off a series on dementia and creative care with the Frye Art Museum in Seattle. These are a few sources of hope that have emerged just in my small world over this year. I am finding that people are eager to talk about dementia in existential, human, and even hopeful terms—without a total emphasis on what is lost and the search for a cure.

BCD: There seems to be a strange mixture of outrage at these nursing home deaths mixed with a sense of relief and indifference that the virus is mostly targeting this demographic who have already been forgotten by mainstream society. For every investigative article looking into the causes of nursing home deaths, there seems to be a chorus of dismissive comments about how it is only dangerous to elderly people. How do you feel about the dissonance between these two reactions?

LCH: I’m deeply appreciative of those journalists, activists, politicians, and families who refuse to let this atrocity slide. No doubt, we have to fix some very concrete problems that leave residents and frontline staff vulnerable. The larger questions must be addressed, too—the big why questions related to the systematic devaluation of care workers, elders, and those with cognitive disability.

I’ve thought a lot about how this past year would have been different if, say, the first outbreak of Covid-19 in the US had killed dozens of college students instead of dozens of nursing home residents. What if the first epicenter had been Seattle Pacific University and not down the road at Life Care Center of Kirkland? There is little doubt in my mind the nationwide response would have taken on greater urgency, and the death toll would not be so high.

Ageism, ableism, dementism are pretty entrenched in the American psyche. But I think there is a growing interest and urgency around these issues.

I am still seething about Texas’s Lieutenant Governor Dan Patrick’s assertion that older people should be “willing to take a chance” on their survival, and Princeton ethicist Peter Singer downplaying the death of older adults because it’s not that many years of life lost. This logic isn’t unique to them; it’s “Ageism 101”: Old lives are inherently less valuable than young lives. There are undeniable racialized dimensions to this, too; nursing homes with significant African American and Latinx populations have been hit particularly hard by the virus.

That somehow the wealthiest nation on earth cannot support their citizens of all ages is ridiculous and simply untrue. But this scarcity mentality is rampant—the notion that either children or elders, millennials or boomers, can get what they need, but not both. We have to question this fight for table scraps when some sectors of society are dining sumptuously.

BCD: In On Vanishing, you mention that your current work as a minister to older adults at The Riverside Church in New York City is sometimes exclusionary because it requires a certain mobility and cognitive function to attend in-person meetings and be a part of an in-person community. Has this changed at all in the era of Covid-19 and Zoom meetings? Are you finding that elderly members who could no longer connect in person are now able to get that sense of community back from online outreach? Or is this online shift creating more difficulties as members find it hard to use new technology?

LCH: The best hour of my week is our older-adult group’s Zoom meeting. The elders, a good thirty strong, amaze me with their flexibility and patience as they—as we—figure out this new, strange, frustrating, joyous way of being community. Yes, one unexpected gift has been that a handful of older members who had difficulty attending in-person programs are now joining on Zoom.

A couple, who rarely attended before the pandemic due to physical and cognitive challenges, participates every week, sitting together hand in hand in the comfort of their living room. I’m thinking of one participant with dementia whose little granddaughter logs her on each week, puts earphones on her grandma’s ears, and impishly waves to the group before bounding off. It’s pure intergenerational magic!

But I do worry about those who have not been able to pivot to this online world. Many of these folks simply do not have access to the internet, smart phones, computers. This doesn’t necessarily reflect their inability to learn newer technologies, but rather long-standing economic and political disenfranchisement. There are also some people who just prefer phone conversations and handwritten notes, who are remarkably resourceful in getting what they need through these channels.

BCD: I was very intrigued to read about how a lot of the language we use to talk about Alzheimer’s comes from marketing by the National Institute on Aging designed to get more research funding from the government. They were working under the assumption that the more scary and threatening the disease, the more research money. That’s one reason we have built up such a threatening vocabulary around the disease.

As speakers of a language, we take for granted so many platitudes and symbols that affect us deeply on subconscious levels. Was it a satisfying journey for you as a writer to get to the root of some of this language and learn how it became so pervasive?

LCH: Yes, it was certainly gratifying to track down some of the sources of the heightened fear and stigma around dementia. Susan Sontag’s warning that “disease metaphors are never innocent” rings so true. I’d maybe add that most metaphors are not “innocent,” in the sense that all languages and ideas have histories. Nothing has dropped from the clouds—not concepts of health, disease, diagnosis—untouched by messy historical and political dynamics.

I think this can feel deflating at times, because we often want purity and constancy across time and space. But I actually find it freeing to understand why we have inherited at least some of the intense dread surrounding dementia. The stigma isn’t simply inherent—so it doesn’t have to remain this way. We can begin to identify other ways to conceive of dementia apart from terror.

BCD: We all die someday, and many of us will suffer from dementia as we age. It seems like these facts would make these conditions universal and comforting, but instead they seem to fill us with a terror that more often than not makes people want to disengage from the elderly and cognitively impaired. How can we work through this personal terror at our own futures and show up for elderly people and those with dementia on both a personal level and a societal level?

LCH: Isn’t that the question—what to do with our own limitations, vulnerability, death? What to do with fear? Dementia activist Kate Swaffer told me about an occasion when, after she had finished speaking about her dementia to a room full of chaplains, an attendee asked her what it felt like for her to know that she was going to die. Swaffer responded by asking the woman how it felt for her to know that she was going to die. I definitely see myself in that chaplain! But we don’t reduce fear of death or dementia by farming out our anxieties to others to resolve.

What gives me hope is not so much the idea that I can vanquish fear, but a growing understanding of how dementia does not have to mean the end of life, love, and relationships. This realization has come largely through getting to know people living with dementia—and learning to exchange the need for control for the desire to be present. I also take comfort knowing that dealing with aging and death isn’t new terrain. I find so much wisdom in visual artists, poets, Shakespeare, the Gospel writers—who are always trafficking in these domains.

We can begin to identify other ways to conceive of dementia apart from terror.

For white folks in America—who are so used to having a certain automatic cultural power—dealing with our deaths means really facing our own allergic reactions to limitations of any kind. It’s what James Baldwin called the need to graduate from “emotional kindergarten,” which seems like an appropriate goal: growing up, maturing as individuals and as a body politic. We can’t do any of this alone; we need friends, guides, communities to usher us along.

BCD: On a similar but more personal note, do you have any recommendations for caregivers of loved ones with dementia? In your book, you talk about initially being very uncomfortable sitting in silence with your own grandfather, but you come to learn so much from it later on in your work to the point it significantly shapes your spirituality. How do you get to a place where you can sit in the moment of that silence and be at peace and maybe even have it be a positive experience? How do you account for this shift in your own approach?

LCH: I hesitate to give advice to caregivers, because they already have so many “to-dos.” I will say this: Caregiving is sacred work. It takes creativity, resourcefulness, intelligence. It can also be isolating. I think it’s important not to go at caregiving alone. Find safe spaces to shed tears, rage, and laugh. I don’t recommend straining too much after silence or some ideal of spiritual tranquility, which can become another expectation, another potential source of guilt.

For me, learning to be present and to gain some comfort with silence has been a matter of necessity. If I want to be of any use to people for whom speaking is difficult, for whom conventional ways of communicating are off the table, then I have to learn other avenues of relating. Being with people at the end of life or with severe dementia has led me to a faith less consumed by words and more taken with the contemplative: centering prayer, labyrinth walks, reading the mystics. I think if we all—not only caregivers—can begin to value compassion and community over cognitive ability and individual achievement, we may find that peace is more possible.

I recall a daughter at the nursing home, sitting by her dying mother’s bed, who said to me that she enjoyed being with her mother in “companionable silence.” I cherish that phrase, because it names how silence can emerge from deep care rather than from disengagement. Practicing this companionable silence is not easy for me. My internal chatter is loud, my need to fill space, to fix everything. There are no tricks, just imperfect practice and a lot of grace. •

Get your copy of On Vanishing: Mortality, Dementia, and What It Means to Disappear.