When the Last Days Keep Lasting

On lingering deaths . . .

He felt lost, alone.

I recall answering the phone.

The caller explained he wanted information for grief support groups. A friend had recommended the hospice where I worked and its bereavement program.

I asked him about his loss.

“My father,” he quickly replied.

“I am so sorry,” I said. “Was he one of our patients?”

“No.” [Which was fine. Our groups typically had grievers from our hospice and the community.]

I reviewed the basics about the group, encouraging him to ask questions as we went along. I shared the start date and time, the number of sessions, and the costs. At our hospice, there was no charge for attendance (along with other resources) if the patient had been served by us. But this man was from the community and would need to pay a modest fee. I also mentioned our scholarships.

He asked no questions.

“When did your father die?”

A long pause. I could hear the copy machine whirring across the hall from my office. A bird fluttered by my window.

“He’s still alive, but he’s dead.”

His words staggered out, like residents escaping a burning apartment building. Gasps and a snuffling of tears sometimes interrupted his explanation. In between weeping, in between him saying, “Sorry, sorry,” I learned more.

His father had a neurological disease (like dementia or Parkinson’s) and nearly everything the father needed had to be done by the son. He loved his Dad. He loved this man who had raised two children on his own after his wife (the caller’s mother) died in a car accident. The disease didn’t care about how good a father he had been or that he’d only recently retired. It impacted every part of his, and now his son’s, life. The son had little assistance. His sister lived on the other coast. With more tears, he described the struggles in her life. She wanted to help. She literally could not.

“He’s not my Dad anymore. He’s gone. Doesn’t talk. Doesn’t do anything. This is so cruel.”

How could the son not want to join a grief group? While yet alive, so much of his father had died. The son grieved. He also wasn’t getting much sleep, hardly ate, and longed to escape all responsibilities. He felt lost, alone. Their finances were a shambles. But he wanted to make sure his father’s last days were with someone who loved him.

On the “last days” kept lasting.

The son was not able to join one of our grief groups. They are for those who have experienced the death of a loved one. However, because my hospice does have various resources, I suggested our caregiver’s group. I let him know that a grief counselor could meet with him. He agreed to the counseling. Soon after the call, one of my colleagues would call him.

Sometimes the season of dying can be a beautiful, precious experience. Maybe forgiveness will happen between estranged family members. Maybe loved ones surround the bed, crying together and swapping old family tales. Wouldn’t it be wonderful if death came as we wanted?

Often it does; too often it doesn’t.

However, I personally understood (for my father had dementia) why the son called, desperate for support. The fancy term is that he had “anticipatory grief.” Grieving can body slam exhausted caregivers watching endless next breaths. Bluntly, his hurt was real.

I wrote about lingering deaths and posted it on my old webpage* years ago. I revised it slightly for a chapter in my book on hospice care. That essay eventually garnered more comments than any other post. The comments were hard to read. They were anguished and angry. They were filled with fear and guilt. They revealed glimpses of caregivers beyond exhaustion.

Oh, how I wish to offer “perfect” words to make a grieving caregiver feel better when a loved one’s death seems endlessly delayed. You know, something like a tidy list of 7 Thing to Do When Your Loved One Never Dies.

I wish I could reassure a frazzled, bleary-eyed spouse/child/parent that after the death—whenever the death might eventually happen—there would be a “happy ending.”

I can’t.

Over a hundred years ago, Edgar Rice Burroughs (of Tarzan fame) wrote a book entitled The Land That Time Forgot. A lingering death can make caregivers feel like they have been dragged into that lonely spot. For what it’s worth—probably not much—I like to think that those who made comments at that earlier post realized they were not alone, that there were others at wit’s end with a beloved who has been near death for a long time.

And yet, even when you “know” you aren’t the only one going through this, you still remain in that place where you are the caregiver for your beautiful spouse/parent/child and they have, through no fault of their own, turned both of your lives into a version of Burroughs’ time-forgotten landscape.

I despise these diseases that steal everything, but refuse to leave the scene of the crime.

I admire more than I can express those caring for a loved one who is dying. And still dying.

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*At my new, updated website, I did post that original essay (HERE), along with a sampling of the comments from grievers.

My book, A Companion for the Hospice Journey, is available at Amazon.

Photo by Logan Armstrong on Unsplash