Death Doesn’t Do Schedules

Late night call

A nurse phoned on the night I came home, letting me know Mom had just died . . .

My father died in early February of 2012. I had visited him five days before, but was not there when Dad died, alone in his bed.

About eighteen months later, in 2013, I was with Mom early in the morning of a hot August day while she lay dying in a convalescent facility. Having been with her for almost a week, I returned home—150 miles south on California’s Highway 99—later on that summer day. I was not with her when she died that night, alone in her bed.

Though my head understands why I was absent when my beloved parents took their last breaths, these are the regrets of my heart.

Dad’s dementia had been going on for years. Even past his ninetieth birthday, his heart was strong. His random, belligerent, disease-inspired actions still intimidated the caregivers at the facility where he lived. Whether a week or a month before he died, no one anticipated his death. Given my mother’s understandable anxiety about finances, we had calculated how much Dad’s care would cost if he lived to 100 years or more. While he didn’t achieve the century mark, we were prepared. How could anyone know that he would die on that mild winter day in California?

Still, regrets.

With Mom, her children and grandchildren gathered to be with her and support each other. Unlike Dad, my mother’s disease was rapid and brutal. In the days with her, whether she was alert or under heavy sedation to fend off the grim pain, we told her we loved her. We said goodbyes. And then a next morning would come. Every day, equally precious and anguished, was viewed as the last moment of her life on earth. There came a day, that hot August day, when I planned to hurry home . . . but I also had plans to soon return to continue being with my dying Mom.

A nurse phoned on the night I came home, letting me know Mom had just died. I called my sisters to share the inevitable news no one wanted to hear.

Alone we come into this world, alone we leave.

Nearing death, do you hope to be surrounded by family and friends?

When loved ones are close to dying, do you want to be with them?

One of the most common questions asked of hospice nurses is a version of:

  • When will I die? (From the patient.)
  • When will _____ die? (From the caregivers, family, and/or close friends.)

The RN, who is an expert (but does not consult a crystal ball or read tea leaves), will likely answer your questions this way:

  • I don’t know, because death can happen at any time.
  • Probably soon, but we can never be sure.

Every veteran hospice nurse recalls the patient she thought would live for another month and died that afternoon. Every veteran hospice nurse has had a patient he thought was a few breaths away from death and yet remained alive for another day or week or . . . well, there is just no precise predicting of when death comes. Arguably, one of the best resources hospices provide to patients and their families is Gone from My Sight. In a handful of reader-friendly pages, Barbara Karnes (a hospice nurse with decades of experience) describes how the body declines when nearing death.

However, even after the hospice staff gives the family wonderful material like Gone from My Sight, they will likely still answer your question about death’s arrival with:

“I don’t know, because death can happen at any time.”

If you want to be with your dying loved one through their last breath, I hope you can. For many, this brings a sense of peace, of honoring a relationship, and of living out an act of love. Our presence with others always matters! Nonetheless, staying beside the dying can overwhelm the strongest of us. It is complicated and demanding. For example:

Because death isn’t predictable, spending the last hours with a beloved can stretch into several days, a week, and even more. The longing to “be there” can turn into a marathon without a finish line. Compassion curdles into crankiness. Gentle prayers are replaced by clock-watching. Calls are made—and made again—to bosses about missing work or to schools about missing classes.

You may see, smell, and hear troubling experiences. While everyone—the hospice staff and the family—seek a “perfect death,” that may not happen. Harsh words can be shouted by the patient or family or both. Supportive families splinter into adversaries. A patient’s agitation or spikes of pain or the sudden flow of various bodily fluids (to be polite) can leave grim images and memories.

As much as I regret not being with my parents when they died, the “negative” of being absent has been diminished by the memories of the times I was present. I often told my parents I loved them. We spent time together. We gathered for holidays. We ended phone calls with heartfelt gratitude. I also continue to think, share and (obviously) write about my parents. To me, that is key.

Sometimes the conversations we need to have after the death is with a grief counselor or support group. Maybe the dying was a difficult time. Maybe you carry painful images around with you. Don’t keep them to yourself, don’t trap them inside self-defeating regrets or doubts.

And for perhaps everyone, keep talking about your loved one’s life to the people who continue in your life. Maybe you were there for the last breath. Maybe you wanted to be, but were stuck at the airport. Maybe you didn’t want to be and were glad you weren’t. Maybe you didn’t want to be there because of dread or anger.

But, in all the different ways we “heal” after a loved one has died, and whether we were with them or not, I believe healing happens because we keep sharing the best, worst, happiest, saddest, funniest stories about our lives together.

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(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.)

A few additional thoughts,

  • Some hospices have volunteers trained to “sit vigil.” If no one in the family can be present, ask the hospice about volunteers being with your loved one. Here’s a link to a recent article on: vigil volunteers.
  • Tell the hospice staff you hope to be with your loved one in the final moments. (But, to repeat, hospice nurses and doctors don’t have magical powers and can only try their best to give you a likely time of death.)
  • Let others in your family know you want to be with your loved one when they die. However, don’t make others feel bad for not planning to be present. Everyone’s needs and reasons are different.
  • You can do everything in your power to be with a loved one, but still have a moment in the bathroom, or a call that must be answered, or a thousand other trivial-to-significant things happen that take you out of the room at the “wrong” time. Please don’t blame anyone—most especially yourself—for a normal moment of life.
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