Delores sits tilted to the right in a worn wheelchair, a curtain separating her from a sleeping roommate.
She is wearing a blue blouse stained with something orange, perhaps Jell-O, and white pants and white socks. A worn gold wedding band adorns the fourth finger of her left hand. Her hair is a shiny gray, perfectly coiffed, and her face is etched with deep wrinkles, a testament to eighty-nine years of life.
A tiny bedside shelf displays two faded black-and-white photos from the 1930s or ’40s: one is of Delores in her twenties, a demure smile on her face; the other shows Delores with a young man in a bow tie–her husband.
A greeting card sits nearby, almost falling off the shelf; its front shows a tree with beautiful, gold-glittered leaves, an old-fashioned style rarely seen today.
Since the card is propped open, I read the scribbled note: “Love you Mom. Miss you so much. See you next week. Anna.”
I walk over to Delores.
“Hi Delores, it’s Dr. Rousseau.”
She looks at me blankly, as if I’m of no more consequence than the air stirring from the Wal-Mart fan that sits on her chest of drawers. I am here to follow up on a referral for hospice care, part of my duties as medical director of a small local hospice.
Delores is suffering from progressive dementia. She was placed in this nursing home eight months back, when her daughter could no longer care for her at home–a decision cemented by the exhausting labor of twenty-four-hour-a-day caregiving.
Delores seems to have adjusted–at least as much as one can adjust to a small, foreign room now called “home.” I’m told that her daughter–herself teetering on the edge of institutionalization because of heart failure, diabetes and arthritis–dutifully visits every Sunday.
“Who are you?” Delores yells as she looks at me with a glowering frown, her eyes lit with confused anger.
I pull up a chair and sit down. I want to spend some time with Delores, to know her, to be in her presence, to learn how she arrived at the doorstep of hospice.
“It’s Dr. Rousseau,” I say. I know she feels terribly frightened and alone, tormented by uneasiness.
“It’s Dr. Rousseau,” I repeat.
She sits silent.
I tell her what nice photos she has, and that her husband was a handsome man.
She sits silent.
I ask how long she was married, whether she had any children and what she did for work.
She sits silent.
I turn on her radio, and soft classical music plays, perhaps Mozart or Bach. I don’t know the name of the piece, but she smiles briefly.
After a few seconds, she yells: “Jack? Jack?” Perhaps a remembrance of a time with her husband?
“It’s not Jack,” I respond. “It’s Dr. Rousseau here with some music. Do you like that music?”
Again, she sits silent.
I notice the open closet, with three pieces of clothing hanging inside: a one-piece dress with flowers and nondescript patterns, reminiscent of the 1950s or ’60s; a white blouse; a pair of black slacks. On the floor sit black Velcro “old people” shoes, their leather stiff and new from lack of use.
I feel humbled by the austerity of this moment–and, at the same time, selfishly fearful for my own future. Mindful of all that I have, compared to all that Delores has lost, I feel blessed, almost apologetic, as I sit with her in this small room.
“These are nice photos,” I say again.
This time Delores turns to look. She stares at the photos for a full minute. Then she looks at me, bewildered, and tears well up in her eyes. Then more tears. Something must have connected, some synapse must have ignited some memories. Or perhaps her tears are angry tears–an anger stemming from the absence of the known, the struggle to decipher the who, the what, the where.
I feel tears well up in my own eyes. My heart breaks for the aloneness of Delores.
“Are you okay, Delores?” I ask.
As quickly as her tears started, they stop.
And she sits silent.
Drifting off into my own thoughts, I ponder my relationship with dementia. Often, as a physician, I’m an observer; at times I’m also a shepherd, trying to provide direction. But with Delores, there is no direction to provide. What I do have to offer is my compassionate tolerance…and my presence.
Touching Delores’ thin hand, I realize what many of our lives eventually become, especially if we live into our late eighties or nineties: a room, perhaps only half a room, mostly empty of mementos but hopefully filled, or at least partially filled, with memories.
I think of how vacant and sad Delores’ life has become, stripped of who she was, what she was and where she was–her life quickly becoming a buried postscript in the passage of time.
And I worry that, with time, I too will become Delores.
Delores inhabits the hopeless barrens of dementia, a place that’s neither here nor there but somewhere in between–unsettled, vulnerable and alone. She lives a frightening yet monotonous life of troubled abandonment, where the known is unknown and the past is today.
It’s scary to imagine myself becoming like Delores, but I know that such imaginings are the inescapable price of doing this kind of work, and doing it in the way that I feel I must do it–by being fully present to Delores and to myself in this moment. In the end, that’s all we have.
About the author:
A hospice and palliative medicine physician for the past thirty years, Paul Rousseau has had some 350 pieces published inAnnals of Internal Medicine, JAMA, Blood & Thunder and elsewhere. “I’ve been writing my whole life, but I have used writing as therapy ever since the death of my wife. I enjoy writing about the patients and families who allow me the honor of entering their lives at such a frightening and vulnerable time.”