When the Last Days Keep Lasting

time and sand

I answered the phone.

The caller explained he wanted information for grief support groups. A friend had recommended the hospice where I work 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.”

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 is no charge for attending groups (along with other resources) if the patient was served by us. But this man was “from the community,” and would need to pay a modest fee. I also mentioned we had 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 now 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 or ALS or . . .) 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 (and the caller’s mother) died years ago 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 took over 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.

The son was exhausted. He and his father struggled with the usual parent-child conflicts, but had grown to enjoy each other, whether playing golf or debating the Giants versus the Dodgers.

“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 was grieving. The son also wasn’t getting any sleep, hardly ate, and longed to escape all responsibilities. 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.

Th 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 will surround the bed, holding hands, 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 he called, searching 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.

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I wrote about lingering deaths and posted it on this webpage a few years ago. I revised it slightly for a chapter in my book. Since first appearing, those words have garnered more comments than anything else I’ve put on Hospice Matters. (Find them: here.) They are hard to read. They are anguished. And angry. They are filled with fear and guilt. They reveal glimpses of caregivers that are beyond exhaustion. If you read all of them, you will notice that a few were follow-ups, letting me know that months or years before the commenter had bemoaned the lingering death. But death did come. And, for that caregiver, after years of caregiving, they felt gratitude. There was, if you will, a “happy ending.”

But not for everyone.

Oh, how I wish to offer a magic phrase 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 Things To Do When Your Loved One Never Dies.

I have no words.

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 a few 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 same 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 very real twilight zone.

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.

(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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Comments

  1. Thanks for this, Larry! My mother, with Alzheimer’s, continues to rally health wise and decline cognitively. I’m so grateful for Hospice support, not sure how we would manage without it. It’s a much longer process than I anticipated, with a range emotions involved. I appreciate you acknowledging that and for your supportive words!

    • Twylla:

      And thank you for your comments. I’m so glad that the hospice helping your mother (and you and your family) is providing the care you need. Though obviously each “patient” is different, loved ones with Alzheimer’s (and other neurological diseases) can often have a slow decline. The disease impacts everyone and everyone needs support.

  2. I know that I have talked about my brother before, so thank you for indulging me further…

    After his dirt-bike head injury, my 21 year old brother was in a “vigilant coma” for 13 years. “Anticipatory grief” is such an accurate description for one’s state of mind during the time. And, then it almost becomes a habit. Always “waiting for the other shoe to drop”, as they say. I do believe that we as a family developed a form of PTSD from the length of time spent in this state of mind. I don’t think that I will ever be able to really let go of that mind-set when I sense the loss of a loved one, or a pet, or maybe anything?

    It does, however, on the positive side, make me (almost) never take anyone or anything for granted.

    So…thank you for your wise words and for giving me another opportunity to process through this life experience.

    • Nancy:

      You are welcome. Always glad (and always filled with sadness) to hear about your brother through your lovely words and memories.

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