5 Things You Must Know About Family Grief

As a trade magazine editor, I like to think I have honed the craft of writing a good headline. One of my mentors urged us to take a page from the cover lines of women’s magazines where most stories involve a number: “10 Things Every Parent Must Know About Paperclips” or “6 Tips for a Super Sexy You” or “Lose 10 Pounds in Less Than 30 Minutes.”

Maybe Elisabeth Kubler-Ross had a background in trade journalism. In 1969, she introduced the Five Stages of Grief: denial, anger, bargaining, depression and acceptance.

I read “On Death and Dying” in 1981 as a junior at Carmel High School. The class was called “God, Sin and Death.” My old boss would have argued for “God, Sin & Death: 3 Topics Sure to Kill Any Conversation.”

Why did I choose this class? What other offerings could possibly have made this one sound the most palatable? Was “Guilt, Guilt & More Guilt” filled?

I am a little fuzzy on the Sin section of the syllabus, but I do recall some of the God and Death material. Prior to tackling Kubler-Ross’ Five Stages of Grief, we discussed Aquinas’ Five Proofs of God’s Existence. (Even in the 13th century, writers knew the value of getting a number in the headline!)

My mom was diagnosed with inflammatory breast cancer in 1981 and died in 1983. I didn’t find Kubler-Ross’ book particularly helpful. As she and others have noted, grief seldom follows a linear pattern: As with mileage and mutual funds, your experience may vary and past performance is no guarantee of future returns.

I wasn’t expecting Kubler-Ross or her book to surface during an ultrasound appointment, but they did.

Prior to having my mastectomy, I had an appointment for an ultrasound and a PET scan on the same day.  Most oncologists rely on some combination of MRIs, PET, CT and bone scans to evaluate the efficacy of the treatment they’ve prescribed for their patients with metastatic breast cancer.

These scans, generally done every three to four months, are physically undemanding but mentally draining. Is your treatment working? Will you have progression? If a change is required, how harsh will the next drug be?

Breast ultrasounds are done in the same department that does diagnostic mammograms at my hospital. Much as a dog never forgets the vet that gave him a shot, I can never go into that department without wanting to get out fast before something really bad happens to me again. The last time I was there, after getting the all clear for my “good” breast I practically ran to the parking lot before the radiologist could change her mind and call me back for more views and more bad news.

When I went to the Radiology to do some testing prior to my proposed surgery it was the first time I had been back since being diagnosed with metastatic breast cancer. I was on edge. Because of the PET restrictions, I hadn’t eaten since the night before. I just wanted to get out of there.

At my hospital, women awaiting mammograms and ultrasounds are escorted back to a large waiting room near the machines and asked to change into gowns. There are four dressing rooms, two on the right and two on the left. Just outside of the dressing rooms are two rows of skinny metal lockers. The key for each locker is on a huge block of wood about six inches long. The resultant din, as a constant stream of women open and close the lockers and the keychains bang again the doors, would rival the percussion section of the Chicago Symphony Orchestra.

Things were moving along. Mammogram patients came and went. I was told I was the next person in line for an ultrasound. Unfortunately, the patient immediately preceding me posed some complications. After waiting a total of two hours, I was taken to a consultation room and told I would have to come back after the PET scan.

I was furious. My nerves were shot. I told the nurse she shouldn’t have promised what she couldn’t deliver. She had the best of intentions, but she shouldn’t have given me false hope.

The radiologist, a woman built like a ship’s prow, came sailing in. “Is there a problem?” she said.

I felt like a rowdy bar patron facing a bouncer. I half expected the doctor to say “I’m going to have to ask you to leave now.”

I explained I was keyed up as the ultrasound was only one of several tests I was having done. Because I have metastatic breast cancer, I must, as my friend Elaine says, hope for the best but prepare for the worst.

“I understand what you mean,” the radiologist said. “My sister died of colon cancer. Your doctor can give you some books like Elizabeth Kubler-Ross’ on Death and Dying.”

I could not believe an actual doctor said this. I have a cell phone. Does that qualify me to serve on the Verizon executive board? I have a flown on an airplane. But I don’t pretend I know anything about how it feels to land one.

I was incensed about the Elizabeth Kubler-Ross book recommendation. As if a 40-year-old book or any book for that matter had all the answers. It was a lazy kind of shorthand for real compassion or understanding.

So it was with great skepticism that I approached “Saying Goodbye: How Families Can Find Renewal Through Loss.” But I came away with respect and admiration for the authors, Barbara Okun and Joseph Nowinski.

Okun and Nowinski argue that medical advances are resulting in longer periods of chronic but ultimately fatal illnesses. Whereas death was often swift in Kubler-Ross’ era, these days it is increasingly the norm for people to live with a terminal diagnosis for an extended period of time.

“Death has become less of a sudden and unexpected event,” write Okun and Nowinski. “In its place has become a process that begins with life-threatening diagnosis, proceeds through a period of treatment (or treatments) and ends in eventual death. This process means that both the terminally ill and the family are increasingly confronted with the need to ‘live with death’ for a prolonged period of time.”

The authors have a developed a contemporary Five Stages of  Family Grief: crisis (the family’s equilibrium is disrupted with the news of the illness); unity (everyone pulls together and does what is necessary); upheaval (guilt, anger and resentment may surface as the illness increasing impacts everyone’s lifestyle); resolution (dealing with caretaker burnout, addressing long standing issues with the patient or other family members); and renewal (balancing grief with celebration and moving forward as a family).

Case stories provide real-world examples of families navigating the realities of death and dying. Okun and Nowinski position their book as road map, but they are realistic: It’s still possible to get lost.

“Lest readers think we are suggesting that this process we call ‘the new grief’ leads to some invariably happy ending, in truth this is not always the case,” says Nowinski. “Some families falter even at the unity stage. Others suffer with resentments and other unfinished business, rather than confronting these things. However, depending on how both the patient and his or her loved ones choose to approach end-of-life, death can lead either to a tangle of loose ends or a departure point for moving forward.”

Like illness, grief also can be chronic. “We do not believe that grief simply ends,” says Nowinski. “Relationships are much more complicated than that. For many people, mourning does not end, but merely ebbs and flows.”

The book targets the families of chronically ill people. But Nowinski notes proactive patients play a key role.

“Terminal illness and death, as best we’ve been able to tell from the many stories we’ve heard, can at best allow the family to move forward without excessive doubt, anxiety or guilt, but only if the patient is willing to participate actively in end-of-life planning before it is too late. Creating medical directives and clearly stated wills — making it clear whether one would prefer hospice care at home over heroic measures in an intensive care unit — puts families in a position to feel that they helped their loved one die with dignity. That, from everything we have heard, is surely a blessing to the entire family.”

You can order a copy of “Saying Goodbye: How Families Can Find Renewal Through Loss” from Amazon.

I’ll be forwarding my copy to my radiologist.

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2 thoughts on “5 Things You Must Know About Family Grief

  1. ElleB says:

    K, I’l be on the lookout for that article of yours, “Lose 10 Pounds in Less Than 30 Minutes.”

    Thanks for the info on the book. Grief is a funny thing. Sometimes the very absence of something shapes us, forms us, in ways large and small. Yet at the same time, grief itself leaves its indelible imprint. The loss, the grief: a constriction point like the middle of an hourglass. Too bad it’s not that tidy in the living.

    Keep writing, keep giving ’em hell.

  2. Having spent the last year and half living with my dad in the shadow of his looming inevitable death this book sounds really interesting,,,I will check it out. I’ve wanted to curse a few health workers for trite comments myself….

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