Sometimes life hands me stories I never could have imagined—yet, once they occur, I realize that I should have expected them all along. This story from my life in an old folks’ home is one such instance.
A little over two years ago, my family placed me in an assisted-living facility for elderly people. (Under my breath, I call it “insisted” living.)
Parkinson’s, peripheral neuropathy, loss of white matter, frequent falls, short-term memory loss, confusion, loss of judgment, vulnerability to scams; their list of my infirmities was more persuasive than my wish to hold onto my previous life: forty-five years of sitting on my porch or walking, immersed in a forest of scrub oak and blackjack; of feeling a sense of belonging in my neighborhood, my community—a sense of place in the world.
The risk of my utter loss of life’s meaning and of a sense of place did not strike my family as a priority. I was simply too unsafe to be left alone, and they couldn’t bear the burden of my care. They claimed necessity and compassion; I felt put out on the curb, thrown under a bus.
The Wonderland they imagined for me—a vigilantly watched, supervised, medicalized life—far outweighed any flimsy notion of “meaning.” That I might waste away from meaninglessness, and die, did not occur to them.
“What if I lived a few years feeling fully alive, then fell and died—wouldn’t that be worth the risk?” I wanted to ask. But this was impossible.
My family’s accounts of how badly off I was, and how much medical care I required, often differed considerably from my healthcare providers’. In the end, my family’s narrative prevailed, and I moved into a 400-square-foot apartment, where I look out my window at asphalt parking lots and crew-cut patches of grass, but am presumably safe and medically cared for.
The change, the discontinuity, felt like a rupture. That I was in deep grief and mourning went unnoticed. My family, the medical staff and the administrators all tried to persuade me to think of this facility as “home” and to feel “settled.”
I found the medical care (provided by a meager, overworked and perhaps underpaid staff) inconsistent; the food, institutional. My soul was starving. Nonetheless, I quickly became friends with my fellow residents (not “patients”) and with the nurses, nurses’ aides and some of the administrators and Catholic clergy.
All my life, I have cared about people. I’ve listened to them and their stories. I’ve never wanted people to feel abandoned or alone. In this medical old folks’ home, I’ve retained this part of myself.
I quickly acquired a reputation as a safe person to talk with. I let people in. Many of them let me into their worlds, and I bore witness to their overlooked humanness. We trusted each other. Though I continued to feel exiled from my own home, I connected emotionally with many people in the facility; I was not entirely lost in space or time.
All too quickly, I also grew aware of the proximity of death—the temporariness of so many of my close relationships. Friendships and intimacies were so tenuous, so fragile, so often interrupted by diseases, deadly falls or disappearance. Occasionally news of a resident’s death came via an official announcement, but mostly it arrived by word of mouth. If the person were alive, but had left for a hospital procedure or a skilled-nursing facility, the nurses were forbidden to tell where they went, or what their condition was. They just disappeared. We lived in a void.
For me, these losses were followed by weeks of feeling utter, wrenching grief over the absent person. In its midst, a new resident would appear at the dining-room table, sitting in the ghostly predecessor’s chair. And the cycle would begin again.
These cycles engulfed me. For many residents, it’s too painful to remember those who are no longer with us. We rarely speak of them. They simply vanish without a trace.
So many deaths in the more than two years I’ve lived here. A dozen or more. I refuse to count any more. I’d come to know each person over many months—around dining-room tables, during hallway walks with our walkers or wheelchairs and, for some, even visits in their tiny rooms.
One by one, we became friends. Though limited in mobility, many of them were not limited mentally or emotionally. They had stories—if someone would take time to listen.
One woman, sometimes confused, would wheel herself into my open-door room and stay for a while. I would invite her to sit in my recliner, which she accepted. She felt welcome. Sometimes we talked. Most of the time she listened to my classical music.
I realized that in an overworked, understaffed facility, an unspoken assembly-line approach rules. Still, some aides take the time to visit briefly with a person, not just to perform a task. For me, every person here is a “who,” not just some diagnostic “what.” So far, I remember every bygone person’s name; I see every face. They are past, but still present. I dread the moment they become mere memory.
Years ago, an old friend, a doctor who works with patients in assisted-living and nursing homes, told me: “You expect that people in assisted living will die at a faster rate than the general population. The facts are inevitable.” I didn’t doubt this: Frequent deaths among people of this age group make complete sense.
My friend was right, as far as the numbers go. He missed, though, my epidemiology of loss. Though our numbers add up to the same total, my demography of grief has accumulated one by one—far too many losses, far too soon. Grief and despair exhaust me.
For more than two years, I have dwelt in an eerie world where it feels like nothing is lost and everything is replaced. A person dies, and the room is immediately cleared, sanitized and made to look like new—as if no one had ever lived there, let alone died.
Grief has been banished; it’s an open secret that everyone knows, but that rarely can be said aloud. I violate that rule in writing this—in bearing witness to the fact that Some-One has died, that Some-One had lived, that their death and their life matter, and that I’ve been blessed with the gift of their friendship and their stories. For me, they have not just disappeared.
Even in the face of so many personal losses and so much snowballing grief in my old-folks’ community, I keep coming back, so to speak, when a new resident appears in the dining room or elsewhere in the building.
I cannot steel myself against newcomers just because they too might die within months. I know loneliness far too well. And I know that the clock is ticking—not only for them, but for me. So I try to help newcomers to feel less abandoned; I try to be present for and with people. I think they sense it, and we gravitate toward each other.
My relationships with my fellow residents, and with the members of the staff and administration, give me life, help me to feel alive.
How can I turn away?
35 thoughts on “My Demography of Grief”
I find this heart-breaking, gut-wrenching and ennobling. Thank you. I am now in my TWELFTH — who thought I’d live this long? — year in an “Independent”/Assisted Living facility which indeed enabled me to keep my husband (neuropathy, heart disease) cared for & relatively happy for the first six of those. I have good friends & barely-known neighbors here. But at 92, still able to walk a few miles daily & travel frequently, I struggle against immersion into the life of the insisted living (thanks for that apt description!) community. It feels too crafted, too insular and obscenely expensive, and somewhat isolated from the disasters facing us “outside.” You are a saint. As such, you’d probably absolve me from the guilt I’m feeling for being so unfeeling of my fellow inmates.
I am so moved by your story. I have a new vocabulary — “insisted” living — and a new appreciation for grief. My octa/nonagenarian parents are living independently but feel each loss of a friend or neighbor acutely. I have gotten better at supporting them through it. Yet, I had not really considered the dose effect — the frequency and potency of the losses you have experienced is wrenching. Thank you for sharing so beautifully.
As a mental health provider to patients in Assisted Living facilities, I would often look around and be astounded that an entire life was reduced to two rooms. Some were stuffed with beautiful objects and others completely bare. Both were sad to witness. Thank you for the eloquent perspective as the inhabitant of this scenario.
What a beautiful, heart-wrenching essay, Dr. Stein, a true gift to all who read it. I plan to use it as our next reading in narrative medicine, so that our learners can imagine themselves in your shoes. Thank you for baring your soul to us.
If you are a young person or someone who has never set foot inside a care facility, reading this essay will provide you with valuable knowledge and insights.
Dr. Stein:
This has to be one of the most beautiful, gut-wrenching, heart-wrenching, and tear-jerking pieces I’ve read in quite a while. Your sentiments, your compassion for humanity, and your story shine beautifully throughout. I so much appreciate you sharing your thoughts and sentiments that everyone has a story and that we should appreciate their stories, hold them dear to our hearts. Unfortunately, the assembly-line mentality of medicine often precludes us and even prohibits us from learning about and appreciating our patients’ stories. We all have stories to tell, and when one leaves us for the afterlife, his/her story shall live on forever. We just need to hear them and appreciate them. Thank you so much for writing this piece, for sharing it, and for telling us your story. Absolutely beautiful. And please continue to write. Don’t ever stop. Your stories, these stories need to heard, read, and shared.
Dr Stein, fellow retired Family Doc thanks so much for this. It brought me to tears thinking of the decisions we had to make for my Mom years back, but also of the intrinsic value of a human being. I kept doing house calls after retirement and this reminded me of all my fragile folks who were able to stay at home because their families and their physician were able to make it all work. Thank you thank you.
This is one of the best pieces I’ve read anywhere in a long time. Thank you for sharing your story so beautifully Dr. Stein. I sent it to my mother who lives in an assisted living facility and it meant a lot to her as it will to many. Thank you
Such a clear description of what it must be like to be totally uprooted and replanted in a foreign place. It is a credit to Dr Stein’s being that he has survived and made a place for himself and is still caring for others. It must surely be a gift to those whose stories he really listens to, but a gift given at great personal loss. .
Thank you, Dr. Stein. When I was first starting to work as behavioral scientist at a Family Medicine Residency, I wrote an article for Family Medicine about the residents’ on-call dreams. You wrote me a gracious and wonderful letter of appreciation for that piece, which helped me realize I had come to the right field, and you were so very encouraging. I see you are continuing to encourage others around you, which of course is terrific.
Lee Scheingold
This is beautiful thanks so much
Howard Stein has always been a leading humanist voice of wisdom, insight and compassion. His massive body of work peers deeply into the souls of physicians, patients , health systems and the complex relationships. I was fortunate enough to be the beneficiary of Howard’s gracious mentoring throughout my career and I will always be grateful to have benefitted from his kind guidance. Once again, in this searingly honest essay, walking in the footsteps of Viktor Frankl, Howard reminds us that our humanity lies in finding meaning, even in the direst of circumstances. Such a brave, generous sharing about his personal plight gives all of us hope that we can always create a sense of purpose through connection with others. Love and grief are inextricably intertwined, and opening our hearts to both, despite every reason not to, is what makes us human. Thank you, Howard, for continuing to light the way.
Breathtaking, inspiring, and devastating. Your message and story is vital. Thank you for sharing.
As a longtime hospice chaplain and death doula, I see heartbreaking stories like this unfold time after time. The unrecognized grief(s) of seniors in situations like yours are legion, and this piece is so important to help prevent other adult children’s good intentions from doing damage in ways they can’t fathom and seem unwilling to hear when a parent expresses it. Much of what I do is counseling for people who aren’t terminally ill but struggling with life as they find it in their old age: filled with countless losses and too little meaning. My heart is with you, Dr. Stein.
I so appreciate this moving piece by Dr. Stein, someone who clearly had contributed to his community and all of our society through his long careers as an academic and a poet. I’ve heard similar stories many times and was distressed when my sister and I felt forced to place our father in a nursing home in 2020 when his dementia did not allow him to stay at home any longer, and we both lived in other states. I’ve often thought that we were lucky in a way that he was so out of it that he did not seem to know where he was beyond his first week after the move. The staff did keep him physically safe, and though he fell ill with COVID, he survived only to die 4 months later as result of pneumonia at age 97. When I think of his final months, I feel a sense of regret mixed with relief that he was no longer falling constantly and driving long after the doctor said he should not do so. But as a society, I know we must do better. Too often the elderly are not afforded the respect and dignity as well as decent medical care they deserve, My husband and I are in our 70’s now and in relatively good health. This will not last forever. I wonder if we will fare better.
Dr Stein, thank you for being present and sharing your kindness through your writing. You are a gift to those around you and everyone who reads this story.
So many lessons within this submission. Every assisted-and long-term care facility administrative and clinical staff should read this. I was struck by the conceptualization of those who disappeared. Often the truth is hidden behind confidentiality but it sounds like it would ease fellow residents if they could learn where their friends went. A policy with unanticipated consequences that needs to be examined and revised to prioritize humane rather than only legal outcomes. Thank you for sharing, it has been eye-opening to read.
Dr. Stein, thank you for sharing your honest and thoughtful perspective on insisted AL, what living there is really like. Please write more.
What a gift you are.
The loving-kindness here is overwhelming.
Thank you Howard Stein, Paul Gross, and Diane Guernsey!!!!
Dear Drs, Paul of Pulse and Stein of 400 . Thank you. Food for so much thought and discussion. Brava for the teachers reading this who will carry your essay with them into the class room. Thank you again.
One of the best pieces published. Brought me to tears. Our family, along with my extended relatives, have never ever thought of moving our parents into a facility. We were honored to care and support them as they had done for us. Your remarkable ability to care for your fellow residents in their loneliness is a gift. I only wish I could whisk you away and bring you to our home where we, along with my children and grandchildren, would envelop you in the love you deserve. You are a treasure
I cannot express the way this piece affected me. I watched my daughter do the same when we were in the ER a number of times. she couldn’t move, but she could talk and she could listen to others. She cared for the nurses and the other patients the best she could, directing me and even the doctor to help another patient. Like you, Dr Stein, she did what she could to make the best of a terrible situation. You are a light. Thank you.
The final lines of Dylan Thomas’ poem, Fern Hill, read: “As I lay green and dying, I sang in my chains like the sea.” Keep singing, Dr. Stein.
As a now retired family doc whose career was a rich one full of patients, colleagues and students, I often think about loss and what lies ahead. Thank you so much. Please continue to write!
May I find a Dr. Stein when I inevitably end up in such a facility. You are a blessing to the other residents.
Thank you. Writing this is an affirmation of consciousness that is also an act of rebellion. This deserves a wide audience. The truth has its own power.
Your writing, your sharing your deep experience, has inspired and educated me for many years, Dr. Stein. This piece continues that inspiration and education. The experience about which you write is so common; but this piece feels totally fresh because the topic almost never is approached with frankness. Thank you for your honesty and for the reminder that we can always make a (positive) difference in the lives of those around us, if we choose to do so.
Kurt Stange
kcs@case.edu
Dr. Stein.
This essay took my breath away. I will definitely share it with my students so they can learn from you. Your words will have a much more profound effect on them than anything I can say.
Thank you.
This is one of the best pieces of writing I’ve seen in Pulse. I wish I knew that you were nearby; I would definitely spring you from that joint for a concert. In the meantime, check out the Philadelphia Chamber Music Society (pay what you will streaming online), and Curtis Institute concerts (free streaming). Other good ones are Detroit Symphony Orchestra (also free), and a lot of good other things on YouTube (like Muti conducting Beethoven 9 for the 200th anniversary of that work, truly spectacular). If you need a streaming device for your TV, please get in touch with me through Paul (Gross) and I will send you one. You have more friends than you know.
Thank you, Dr. Stein, for your eloquent and heart-felt narrative of being in Insisted Living. Thank you, also, for caring for your “housemates” and being there to listen. Thank you, PULSE, for publishing Dr. Stein’s essay.
Beautiful and moving. Bless you, Dr. Stein. Thank you, Pulse.
Beautiful. Thank you, Dr. Stein.
This is beautifully written, and it beautifully captures what is surely not an unusual feeling of loss and reconnection and more loss. It’s striking and lovely that the author doesn’t blame his family – he doesn’t blame anyone. I shall look for more of
Howard Stein’s work. Thank you, Dr. Stein, and thank you, PULSE.
I don’t blame the author’s family. But I do blame Donald Trump, Congress, and my state legislature for underfunding rest homes, while they blather on about trivial subjects.
I am 71 years old, and I consider that my cardiologist is flipping a coin as to whether he will be successful. If he saves me from dying of a cardiac problem, will be be condemning me to an eventual rest home? I hope that I will die peacefully in my sleep, at home.