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Are family caregivers 'mad as hell?' Many are, and for good reason

Carol Bradley Bursack hears from a reader who feels they weren't given enough information about hospice and other alternatives as as their father went through cancer treatments.

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Carol Bradley Bursack, "Minding Our Elders" columnist.
Contributed / Special to The Forum
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Dear Carol: My dad, 83, has received bladder cancer treatments for years, but now his cancer has become aggressive. Unfortunately, so has his oncologist. Dad has rarely questioned his doctors, so even though he’s in agony, he’s accepting each new treatment without asking for alternatives. He’s always been emphatic that when treatments don’t work, he wanted hospice care, so we’re now determined to transfer him. It’s a process, but we’re getting there so I’m not writing for advice. I just want to know why alternatives to last-ditch treatments that simply “buy time" aren’t better explained to patients. — GM.

Dear GM: Doctors are trained to cure, which is admirable if a cure is feasible. In many instances, though, giving a patient, particularly an older patient, “more time” at the expense of comfort and family time extends suffering rather than life. This trade-off should be clearly explained to patients as well as their families and discussed in view of overall end-of-life wishes.

Your note reminded me of my neighbor who, like your dad, had lived with bladder cancer for years. Following his death, I expressed my sympathy to his widow. After thanking me for my words, this normally gentle woman launched into a livid rant over her husband’s care. The doctor had routinely ordered excruciating treatments right up to the day her husband died. The alternative of comfort care was not even discussed.

Read more columns from Carol Bradley Bursack
Columnist Carol Bradley Bursack responds to some of the things readers commonly ask about her writing and how she chooses topics.

Your note spurred me to share information about “Caregivers Are Mad as Hell: Rants from the Wife of the Very Sick Man in Room 5029,” by Ann Brenoff.

Brenoff cared for her not-so-elderly husband who suffered from kidney disease — and yes, she’s on a rant. That said, she’s a professional writer with a Pulitzer, no less, making her passion-packed rant relatable as well as informative.

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Her story expands on some well-documented concepts:

  • Family caregivers, whether spouses or adult children, are often ignored by medical teams.
  • Family caregivers are routinely required to perform medical duties far beyond their experience with little or no training in this area.
  • In Brenoff’s husband’s case, increasingly disabling, painful and useless treatments were continued to give her husband in their words “more time.”

While “Mad as Hell” is a personal book, it’s broadly useful. Readers will relate to Brenoff’s fury over her husband’s care. They’ll also root for her as she struggles through the daunting aftermath of his death such as bills that she can’t cancel without his approval. They’ll also cheer as she struggles to establish her identity as a widow, and eventually remarries.
I encourage caregivers of terminally ill people who feel dismissed, ignored and angry to read “Mad as Hell.” You’ll feel a connection with other caregivers while you gain from Brenoff's passionate energy.

To you, GM, I’ll assure you that most of us who have been long-term caregivers for older adults learn that when it comes to treatments in the last stages of life, less is often more. My heart is with you as you stand with your dad during this painful time.

Related Topics: WELLNESSFARGOFAMILYBOOKS
Carol Bradley Bursack is a veteran family caregiver and a nationally-recognized presence in caregiver support. She's the author of “Minding Our Elders: Caregivers Share Their Personal Stories,” a longtime newspaper columnist and host of her blog at mindingoureldersblogs.com. Carol's an introverted book nerd, so you won't see her mugging in viral videos, but you can easily reach her using the contact form at mindingourelders.com.
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