Hospice and a Lingering Pandemic

Sheltering during virus

The essay with the most comments on this website was written in May 2016, almost four years ago. There were immediate responses to the article when it was first posted. More readers have added their thoughts in each passing year. I felt it essential to include a version of that “popular” article as a chapter in my 2019 A Companion for the Hospice Journey book.

It was on lingering death.

It was about those deaths that take more time than anyone—the medical professionals and the caregivers—ever expected or predicted.

We in hospice inform families that our comfort care is for those who have been given six months or less to live. That is a hard message to properly convey! When hearing from their doctor, or perhaps a hospice nurse who is the first to explain about the comfort care vs. cure services, there are families unable to comprehend the “six months” part. Maybe they are foolishly optimistic, or maybe they are dumbfounded by the new and terrible diagnosis, but some families are convinced their dying beloved will “graduate” from hospice care. Why, six months from now, won’t their spouse or parent beat the disease and return to . . . normal?

Normal?

Some continue to cling to these thoughts until nearly the last breaths. And then, weeks or months after entering hospice care, death does come.

Or, and these deaths are gut-wrenching and soul-shaking, the final days (or hours) happen like the sudden arrival of a tornado. Maybe Pops was taking the usual morning stroll and still playing that regular card game with retired army buddies at the VFW hall last weekend. Then that damn doctor’s appointment. Who knew cancer could spread so quickly and silently? The blunt truth is told, and in fewer days than are on a single hand, a grandparent is imminent on a rented hospital bed. So quick!

Yes, the hopeful but unrealistic thoughts that it will be my loved one who beats the odds and “graduates” from hospice care happen. And, yes, the quick deaths happen.

Too often, the most overwhelming deaths for family and friends are the ones that linger. Read the comments from that 2016 article: Why Hasn’t He Died Yet? They are anguished and/or angry. They are from devoted but exhausted adult children. They were written by loving spouses who became frazzled caregivers.

Why am I thinking about this?

Equally fair and unfair to compare, many of the challenges faced when a dying loved one lingers parallel our responses to the Covid-19 pandemic. Here are some questions and grumblings frequently expressed by anguished, worn-out caregivers:

  1. How long will this last?
  2. Why is this happening? (To the patient, or caregiver, or both.)
  3. Why do I feel so helpless?
  4. I feel trapped and alone and afraid and _______.
  5. This is unfair!
  6. Why is everyone else doing better than me?
  7. I have no idea what day it is.
  8. This wouldn’t have happened if __________.

Are any of these eight similar to what those “sheltering in” might express?

Or is it fair to compare? After all, caring for a dying loved one who keeps not dying is highly individualistic. If the initial feelings of compassion become corroded with resentment, the patient is still a parent or grandparent or spouse or child. The exhausted caregiver is trying to honor that particular relationship. Additionally, even though the caring becomes a grind, with personal schedules wrecked and every day a blur, the effort is based on supporting the loved one until their last breath.

However, with this pandemic, everyone is alone but also together. When I stay home, except for limited, essential tasks, the vast majority of my neighbors are doing the same. Sure, there are well-publicized examples of inane students partying on Florida beaches, but a “shelter in place” order applies to my entire neighborhood/city/state. Others are bored, lonely, fearful, irked . . . just like me.

When will the dangers from Covid-19 end? When will our efforts be over? Who knows! No surprise, my wife and I are watching more television, and viewed (again) the 2003 thriller Identity with John Cusack and Ray Liotta. Like many films and novels (cue Agatha Christie), the plot is driven by each character’s abrupt death. Whodunnit? Who dies next . . . and then next? And who, with all the Hollywood sleight-of-hand, will be the “last one standing” before the credits’ role?

Maybe not the best choice of “fun” movies during a pandemic?!

When will the last one standing remnants of this here and now virus be overcome?

Never?

That’s what is scary, what is far from any good or bad Hollywood ending. One day, hopefully soon, there will be immunizations. One day, even a “cure.” But won’t there be another virus, spawning similar questions and dread?

When glancing above at my intentionally short (it could be longer!) list of eight questions and grumblings, I suspect variations will always be expressed during our worst times. Today, rightly, many feel emotionally vulnerable and physically fragile. Today, the proverbial light at the end of the tunnel is just as likely the proverbial freight train of fear headed my way.

A lingering death disrupts every aspect of the caregiver’s life.

So too, this pandemic disrupts us.

How will I choose to live each day as I awake to a new morning? Fearful of the past or hopeful for the future? Bitter about my losses or seeking to make life better for others?

(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.)

Facebooktwitterredditpinterestlinkedinmailby feather

Comments

  1. I was finally able to enjoy the freedom of not being a care-giver. I say this knowing many would be shocked but those who have been care-givers know exactly what I mean. For five long years I was the primary care-giver for my best friend. She had extended me great generosity and compassion some twenty years before and now it was my turn to offer the same compassion, the same generosity. Oh, it began quite well. Then, one year. And, another year. Year three she could do nothing for herself. I never wanted to be a nurse. I was an artist and a pastor. For three years I bathed and fed and took care of my dear friend. In the fifth year there were days she didn’t know me. Year five was the year guilt set in and I went from being sad to being angry and I didn’t know where to turn. There was no one to relieve me. She had no family. If I wanted a break (the first three years I went to work), I had to pay someone and that made me feel guilty too. Being a caregiver is glorious, crappy, sacred life-giving and life-stealing. I was there when she died. I promised her that she would never go to a Nursing Home. I took her to the door of a place I could not yet enter. She went through it alone. And then, I was alone. It’s 10 months since she died. It’s been a tough recovery and yet I’ve learned to have a new relationship with my friend who has not really gone.

    • Pat:

      5 years! Whew . . .

      Thanks for responding, thanks for your truths. And for: “Being a caregiver is glorious, crappy, sacred life-giving and life-stealing . . .”

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.