We’re Alive Until We’re Not

I don’t usually write posts of this length, but once I started, I had to keep on writing. This is dedicated to the unique gentleman who allowed me to share the last 18 months of his life. I will carry his memory forward with me. And here’s a loving shout-out to the dedicated staff at “famous 4A,” the hospice unit where I volunteer.  Please share this with anyone who doubts the value of hospice care.  Hospice offers a gift of time to those who chose this experience at the end of their lives.

Mr. S and I met eighteen months ago when he moved to the hospice where I work as a volunteer. At the time, he was a robust man whose appearance was initially intimidating. His pointedly-arched, bristly white eyebrows; piercing blue eyes; white hair swept back from his receding hairline…revealing a brow and forehead whose shape indicated that a sharp mind was operating within.

Those first days, he kept the door to his room closed, but thanks to the glass paneled top-half of the door, I could see him sitting by the wide window, looking out at the main entrance and driveways of the hospital, watching the comings and goings of people, the assortment of vehicles (buses, vans, ambulances, passenger cars, pick-up trucks, motorcycles, scooters and wheelchairs), and the landscape of hospital grounds and rolling hills beyond.

It’s not so easy walking into a patient’s room for the first time. You never know how you’ll be received, if at all. We have the daily census that gives us the patients’ names, ages, dates of admission and an alphabet-soup of medical abbreviations describing their diagnoses. I prefer to go in “cold” to meet new patients, and look at the census info afterward. That way, I meet the resident as simply another person, not the terminal version of a specific disease.

I took a deep breath, knocked and opened the door, and introduced myself. “Good morning, Mr. S. May I come in and visit with you?”

He looked me over, growled and hesitated. Then he indicated I could sit by the window on the chair facing his.

When I went in and sat down, I saw why he kept the door closed. A pet parakeet was perched on his dresser. Seriously relieved to see that we’d have something easy to talk about during our first meeting, I relaxed into my chair.  Animals! Pets! Testing the “rules.”  Mr. S and I had common interests.

The bird was gone the following week. It was sent to live at his son’s home. But the foundation of our relationship was formed and it grew stronger with each visit.

Over the next year and a half, we shared stories about things that made us happy, sad or angry. We laughed often and loudly every week. I soon became addicted to Mr. S’s dry, dry wit and acute observations about people. While he was still feeling strong and mischievous, he’d drive his scooter way too fast, up and down the hospital corridors, and I’d trot alongside, waiting to be “caught” and scolded. We went outside often so he could scatter his carefully curated bread-and-cookie-crumb collection for the birds. Mostly, we laughed and congratulated ourselves about being both clever and silly.

Between visits, I looked forward to hearing more about the long journey of his life, from his remembered childhood through his adjustment to living in hospice. He described his beloved deceased wife; the differences among his three grown sons; his itinerant youth; his education, work life and where he’d lived.  His family began to feel like unseen but familiar people to me.

A medical prognosis that the patient will probably live no more than six months is one of the criteria for admission to hospice care. This time is usually experienced as a gift. For the most severely ill or most pain-stricken patients, palliative medication and care improves the quality of their lives, enabling them to wrap things up with family and friends. It provides psychological (and often spiritual) space to prepare for dying.

For those of us who work with patients, hospice offers another gift: learning from people when they are most tender and vulnerable and open We discover — first-hand — lives lived both well and not-so-well. If, as with Mr. S, the patient lives in relative comfort beyond the 6-month marker, we rejoice! There’s even more time to share with our new friends.

Lately, I’ve entered our hospice unit feeling very hesitant. Mr. S has been declining rapidly. I peek, one eye at a time, at the name plate next his room, anticipating that it will no longer be there. A few weeks ago, I began to stop by more frequently, pretty sure that each visit would be our last. His body is now reduced to a skin-covered skeleton and his thoughts come out in disjointed fragments – or not at all.

When I arrived this week, I was stunned to see Mr. S standing in the doorway of his room, facing the nearby nurses station. Halloween decorations were still hanging on the unit’s walls and ceilings, a backdrop for his shrunken form and bedraggled appearance.
“You’re here!!” I burst out. “And, you look like a character in a high-school Halloween play,” I thought. Just a few months ago, we would have laughed about his looking scary.  Today, the words were too true to joke about.

“What are you doing out here? Heading over for some Halloween candy?” Mr. S has a world-class sweet tooth.

“I was waiting for you,” he mumbled.  I hugged him, easily encircling my arms around his small, bony frame. I wanted to hug him harder, but he felt breakable. We slowly shuffled back to his seat by the window. I stood next to him and silently rubbed his back, as I’d done over the recent weeks, while he progressively lost the ability to chat.

So, this visit was a shocker. He’d been up and moving. Mr. S was more alert than he’d been lately. I sat down in the chair opposite his and looked into his dimmed, blurry-looking eyes.

“You look like you’re thinking hard about something,” I asked.  “I wonder what it is. Want to tell me about it?”

He sat there, processing for a few minutes. I looked at him, waiting. Mr. S was clearly working hard to organize his thoughts.

“What would you do if you were in control of your life?” he said, deliberately and clearly.

I carried his question home with me. I’ve thought of little else this week. It is now a filter through which my thoughts and decisions must pass.

Thank you, Mr. S, for enriching my life. Your question is now my question. It can only be answered by living.


6 thoughts on “We’re Alive Until We’re Not

  1. I have worked with Hospice pts over the years, though not as a volunteer. The wisdom and insights of people who know the end is year are powerful, and real. Sometimes I wonder who gets more out of such interactions. I think that not being a family member can be, though not always, an advantage to get at the nitty gritty of what it’s all about. And clearly the gift of connection is more than two ways and the line between giving and receiving is totally blurred. I liked your piece..

    1. Your comments enhanced this post. Thank you. I agree with your observation about the unique role of non-family members. Hospice staff relate to patients without having to navigate around a lifetime’s worth of “baggage” (good and not good) about the person. For us, we can give unconditionally. Sometime, family members see this and it enables them to work through their issues with the dying patient. Dying is a seamless part of living. I think that as our generation moves in that direction, the sterile, wired-to-machines kind of death will diminish.

    1. Without invasive, often pointless medical interventions, people can move thru this last phase intact + “full of life,” despite the loss of physical activity. Yes.. Mr S’s question reminds us to live purposefully. You seem to do this quite well.

      1. I suddenly realize that I do have control of my life for the first time in a long while, and I should look at this as a blessing. Thank you and Mr. S.-GG

      2. Sometimes we learn things from unexpected sources, and in surprising ways. So much depends on how we choose to see things. Huge hugs to GG.

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