Regrets in a Season of Disease

I think of an elderly woman, who sometimes feels like she is in jail . . .

“This is not prison,” she said. “I know that. But, just a little bit, just occasionally, and if I’m feeling down, it does seem . . .”

She paused, sighed, and then added, “. . . like I’m stuck in jail.”

I remember the call from back in April, wanting to see how she was getting along a month after her husband had died. He had been my hospice’s patient since the beginning of the year. From just after Christmas to nearly the start of spring, the husband (and father of three) had gone from taking walks with his family to bedbound. His wife of over sixty years, the woman I called, held his hand when he took his last breath.

And then she went to “jail.” The Covid-19 pandemic, in the final weeks of his life, was all over the news. If he had died a week later, she may not have been by his side.

“We were lucky,” she said, not sounding lucky.

A few years back, they had moved into a “senior citizens’ joint” (her husband’s words). Their small apartment was adequate. The twice-a-day meals were nourishing. The facility staff was friendly.

Then, shelter-in-place.

Now, at time of my call, the food was brought to her. A knock on the door: “Dinner, ma’am.”

She waved through her window at other residents through their windows.

Several times a week, she bee-lined for a far corner of the sprawling property to claim a bench in a shady spot near one of the busy avenues serving as the boundary for the facility. One or more of her kids or grandkids would bring a lawn chair and camp six-feet away for a visit. It was as close to family as she could physically get. They would chat. Cry. They would tell family stories. They would sneak her favorite lemon bars to her . . . sneak because the facility had sent out those flyers and emails warning about “outside food.”

What will grief and grieving be like whenever the time of Covid-19 becomes more a past tense piece of history, rather than our daily reality?

I suspect the woman I talked with will continue to claim she was one of the lucky ones. She did get to be with her husband until his death. Some will not.

She had a way, even if it felt like she was an inmate hiding from the guards, to occasionally visit with family. Some do not.

She had food delivered, daily check-in phone calls from staff, and if something broke down, one of the maintenance crew would show up. Some have no one.

This pandemic of 2020, in the year that sounds like a hindsight, impacts everyone. Everywhere. In so many different ways.

  • How we visit the dying. Or don’t.
  • How we communicate with family and friends. Or don’t.
  • How we take care of the “business” after death. Or don’t.
  • How we grieve. Or don’t.
  • How we heal. Or don’t.

Under “normal” circumstances, grief can birth regrets. We regret not having a final conversation. We regret not seeking or giving forgiveness. We regret not spending enough time. We regret arriving too late. We regret ancient unresolved arguments or new scars caused by angry words.

How many regrets—from those we can discuss to those we avoid—will emerge for individuals and families from this unsettling season of social-distancing? Whenever the pandemic is “over,” I worry about the ongoing regrets (and guilt and blaming) that may be experienced. It doesn’t matter that the cause of those negative reactions were beyond our control. Care facilities would not allow families to visit until the final days or hours (or minutes) of their loved one’s life. How many “last words” were spoken on a phone or with a tablet’s screen . . . or not at all?

  • What if the family was not allowed to visit at the “right time?”
  • What if donning the necessary personal protective equipment took too long, and death came before a mask was secured?
  • What if we spent more time arguing with the facility staff than time beside our loved one?

Those festering reactions—the regret and guilt—which had NOTHING to do with our actions will burrow deep into our fragile souls.

Not long ago, I read Gina Kolata’s Flu: The Story of the Great Influenza Pandemic of 1918 (published in 2005). It’s a plunge into the twentieth century’s first global pandemic, the so-called Spanish Flu. Surprisingly, the opportunistic disease, a killer of as many as fifty million people from every part of the world, became a forgotten part of that era. Kolata wrote, “But the flu was expunged from newspapers, magazines, textbooks, and society’s collective memory . . .” Was that cruel virus forgotten because it came during a World War and added to that conflict’s horrific death toll? Or because of being followed by the “Roaring Twenties?” Was there a preference to party into today’s night rather than recall yesterday’s nightmare?

Historians will continue to ponder 1918’s “season” of illness, and the survivors’ selective, collective lack of memory.

What about the here-and-now? I think of families without funerals, of delayed or derailed gatherings where no one had a chance to hear a favorite story about their beloved. I think of lovers and friends, children and parents, spouses and partners, that did suffer and do suffer because of regrets. I think of health care workers, those on the front line, those who are often weary, sometimes fearful, but still show up the next day to try to continue the healing. I think of an elderly woman, who sometimes feels like she is in jail, sitting on a bench in the shade, and longing for her family’s companionship.

Don’t forget this time.

Of how much you hurt.

Of knowing that many of the regrets you have were not your fault.

Even with tears, even with the excruciating pain of loss, remember your loved one’s love.

(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)

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  1. You know, Larry, I’ve written some pretty negative things about hospice. I remember writing that the one redeeming factor was the chaplain I refused at first. After all, I was an ordained minister and can take care of everything. Through a series of mishaps, the chaplain showed up. Of course, I was polite but before long this stranger won my heart so i was crying and confiding in him like a child.

    New thought – i’ve been complaining to you and crying as I would write a note here. All of a sudden I had this light bulb experience. YOU ARE a minister and a chaplain and you have been fulfilling a role I thought I was past. You have become the person I look forward to each week and even though this is a public arena I write whatever is on my mind as if I was the only one in the room. You have helped me heal in ways I could not have predicted and as a chaplain /minister “you done good.” So, thank you. Thank you.

    • Pat:

      First, writing “negative things” about hospice is fine. All hospice care occurs during extraordinary, difficult, and complex times. No hospice is perfect. All hospice staff are, well, only human. Having disappointments, mistakes, miscommunication, and frustrations are, if not high, certainly possible for caregivers and/or families. I hope that most of the “negative” is resolved during the care. I hope that the “negative” is outweighed by the positive. But I also know, in the years I’ve contacted grievers after a loved one’s death, that on occasions, the “negative” is the last and lasting memory of the hospice experience. I, in a sense, “grieve” when I hear about the “negative,” but it does happen. If you, or others, write about that on this site . . . maybe in some small way it will help. (Or not add to the hurt.)

      Second, thanks for your kind thoughts for my work.

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