The long years between the last words and the final breath

Visiting the dementia unit of a nursing home is never easy.

First off, you have to find your patient amid the assemblage of people–mostly women–seated in wheelchairs, recliners, wingbacks, sofas and assorted walkers, or wandering around.

Then, you must make yourself known to the person you’ve found. Here’s where the harder questions arise: How can I introduce myself and convey my role–a hospice chaplain–to someone who has outlasted language? Is my state of mind so calm and engaged that my very being will exude peace and generate trust? Am I totally present, or is my mind bouncing back and forth between tomorrow and yesterday? And just what does it mean, as a hospice chaplain, to provide spiritual support to someone at the end of life?

The end of life can be big drama, that’s for sure. In nearly a decade of doing this work, I’ve witnessed momentous final decisions; conversations carried on with mysterious, unseen figures; visions of the afterlife; and eleventh-hour forgiveness. We release each other–one back to the seen, known world and one into the unseen, unknown–and are ourselves released.

For many elderly patients, though, the experience is far from dramatic. More often, there can be long months, even years, between the last words and the final breath.

Meaning and identity dissolve. The roles men and women have played in life–mother, father, teacher, neighbor, The Pretty One, Mr. Fix-It, Always Dependable–all wash away.

The connections forged over a lifetime–with parents and siblings, with lifelong friends and neighbors, with fellow church members–become a part of the past: Everyone else has moved or died or gone round the bend. Even when people can still talk, they barely have the strength to pick up a phone.

When the memory fades, so do long-cherished concepts of God. It’s my observation that rational concepts last longer than our knees and teeth, but not as long as our lungs and bowels.

Human life has its own inexorable arc. When we’re born, we emerge from God knows where into the world–one with our mothers, unaware of ourselves as separate. The arc of our life begins as we develop a sense of ourselves as finite beings within time and space.

At the height of the arc, we do our best to wield our abilities and aspirations–to realize our potential and resist our despair.

Then, somewhere along the way, a great unraveling begins. Eventually, becoming untethered from time and place, we return to the unknown from which we emerged.

As someone who’s still at the height of the arc, I often wonder what I can learn of this great returning before it happens to me. I ask myself what might be revealed by elders–people who stand closer to the brink of the final unraveling. Can they perhaps look over the edge and report some of what they see?

Marlys was such a one. Living in a dismal warehouse of a nursing facility, she was well into her nineties. Her dementia had progressed, and she was now on hospice because she was no longer eating much, had lost her ability to fight off infections and had generally withdrawn from the world. “Debility and decline,” they call it, or “adult failure to thrive.”

Her chart listed her as an atheist–yet, despite that, I have her to thank for perhaps the most indispensable guidance I’ve ever received as a hospice chaplain.

Our initial meeting was not propitious.

Locating her slumped-over gray head among all the others in the crowd of wheelchairs parked in front of the giant, blaring TV, I greeted her cheerfully: “Hi, Marlys.”

She gave me a groggy look and went right back to sleep.

I sat next to her. She let me hold her hand, so I stayed with her for a while; you don’t have to be religious to appreciate a little friendly respite from Jerry Springer and Judge Judy.

She didn’t have any family, really, so there was no one to tell her story. She’d never had children, and her siblings and husband were all long dead. She lived half a country away from her native Arkansas; her only remaining family was the daughter of her sister’s daughter. The grandniece lived a few hours away, with young kids, a full-time job and all the frantic trappings of a twenty-first-century life, so couldn’t often get to the nursing home.

I didn’t learn anything about Marlys or her life until the grandniece and I were planning her small, simple burial service. Turns out that Marlys was pretty interesting: She’d been one of the first woman doctors in the rural Ozarks.

The grandniece didn’t know much about her except that she was one of the only women in medical school at the University of Arkansas in the 1950s, and that her husband was considered unusual because he was fully supportive of her career.

I felt so sad that the stories of this progressive, groundbreaking woman had faded with each generation. I could only imagine what was lost–a whole chapter in the history of public health. Think of the passionate arguments for and against women in medicine, stories about patients saved or lost, stories of those who’d shared and shaped her journey. Is there anyone in her family who can carry Marlys’ vision, courage and determination into the next generation? Is her story lost?

As I continued to visit Marlys over the months, she began to recognize me. She’d try to talk, but you could see the words just dissolve between her brain and her mouth.

At the same time, it got harder and harder to find her awake. I wondered if my interventions were doing good, harm or nothing at all.

One day I asked her, “How can I, a chaplain, support you, an atheist?”

She looked right at me. Then she spoke, so clearly:

“Believe in me.”

I felt she was asking me to keep hold of the woman she had been–to see not a disabled old woman but a doctor, a wife, a great-aunt, a friend, an early pioneer of women’s rights. She was asking me to see her with my heart, not just with my eyes.

In the seven years since, this charge has kept me in my seat when I otherwise would feel like running away from people whose language is nonsense, whose needs seem incomprehensible and whose confusion overwhelms my problem-solving skills.

Entering a nursing home, I no longer see just a crowd of old people in wheelchairs; I’m acutely aware of the teachers, singers, travelers, neighbors, poets, jokesters, builders and who knows whom else I may be accompanying on this journey.

Marlys is dead now, but I still hear her voice sometimes. She speaks to me when I sit with someone who can no longer tell me his story, somebody who has no visitors because she can’t converse anymore.

Marlys reminds me not to forget those whose memories have left them.

“Believe in me.”

Kathy Speas is a hospital chaplain.  This piece was originally published in Pulse — voices from the heart of medicine, and is reprinted with permission. 

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