Katy Butler’s frankness and knowledge of end-of-life issues make her interview [“The Long Goodbye,” by Sam Mowe, April 2014] a refreshing change from the usual writing on the subject. In most bookstores there is an entire aisle of books about how to care for babies, but go looking for similarly helpful instructions on how to care for a dying loved one and you’ll find a few volumes of well-meaning advice on the correct philosophical outlook to assume as death approaches.
My seven years of work as a certified hospice and palliative-care registered nurse has taught me many lessons. I often tell my patients’ families, as they begin providing home care for a loved one, “This is the hardest and the best thing you’ll ever do.” What I don’t tell them is that they are totally unprepared for it. Their good intentions and media-skewed understanding of the proper use of narcotics and what a “good death” really means will probably stand in the way of their helping the patient — and themselves — to remain peaceful and comfortable.
Few families realize that taking their loved one home to die will be a messy, confusing, frightening twenty-four-hour-a-day job with no definite end in sight. (I can’t tell you how many times a patient has been told he or she has two weeks to live only to remain alive six months later — or to die the afternoon he or she comes home from the hospital.) But those families who do pull together to share the burden are the lucky ones. Several factors are increasing the chance that more of us will be so lucky: the growing number of physicians and nurses who are certified in hospice and palliative care; the informed acceptance of medical marijuana; and the testimony of families who have kept a dying member at home and now wouldn’t ever dream of doing it any other way.
I couldn’t put down “The Long Goodbye” until I had finished. Thanks to Sam Mowe for his interview with Katy Butler about an issue that is too often relegated to dim hospital corridors in the middle of the night.
Twenty years ago my mother — against her own directive — was wheeled off to an ICU, where doctors worked furiously to “save her life,” while her family was holed up in a waiting room. It was only the insistent pleading of my brother, a physician, that brought the ICU doctor out to talk with the family.
Five hours later we stood and held Mom’s hand amidst all the beeping machines and said our goodbyes. It was not the way Mom wanted it, nor I. Yet, more frequently than not, this is how Americans are saying goodbye to loved ones.
My wife and I are entering our retirement years and beginning to contemplate our own long goodbyes. We have living wills with medical directives, but I am also making copies of the Katy Butler interview to send to all three of our children.
In 2013 I was diagnosed with colorectal cancer. “The Long Goodbye” prompted me to think more about the impact my end-of-life decisions may have on others.
The process of dying is a road that can be traveled only alone, but my attitude and behaviors while I’m on it affect everyone around me. I have passed through so many emotional stages during the last few months that it’s difficult to recall them all. I reacted to the news initially with shock and disbelief, followed by a resolve to beat the illness on my own terms. I rejected the chemotherapy and radiation because of their devastating side effects. Then, when the cancer advanced, I chose to have those treatments because I believed they would grant me a better quality of life. The chemo and radiation reduced the tumor, but I contracted a bacterial infection that required three rounds of antibiotics and caused months of painful intestinal cramping and distress.
Now I can no longer enjoy food because I am unable to taste and have no appetite. My kidneys are damaged, possibly permanently. I have lymphedema in my legs, ankles, and feet because my lymph nodes were destroyed by radiation. It’s painful to walk. I’m anemic and forgetful. It saddens me that my family must stand by helplessly and watch me wither away.
Death does not scare me. I accept that it will come eventually, and I believe that there is an afterlife. But the process of dying frightens me. Will I have control over the circumstances of my death? Will it be lingering and painful? Will I be prepared for it? Will my family be prepared? How will they be affected by my demise? These are questions that, until now, I hadn’t thought to ask.
I woke this morning to the sad news that novelist and short-story writer Gabriel García Márquez had died. At lunch I read from start to finish Linda McCullough Moore’s short story “On My Way Now” [April 2014]. I was hooked by this line: “The devil buys the soul and gets the body in the bargain.” She ties together life and death with such a fine ribbon of humor and sadness. I’ve taken to highlighting my Suns as I read them, and this issue is yellow from front to back.
Linda McCullough Moore’s “On My Way Now” shook me, scared me, and made me laugh. I felt as if my own mind were losing its bearings as I entered the narrator’s thoughts. She rebelled against others’ attempts to control her but had no real power except to give voice to her perceptions.
I identified with Andrea, the narrator’s daughter. My own mother entered assisted living a year before her death. Even though I tried to be a good daughter, visiting often, she thought of that place as a jail. Moore’s story made me see how I held the power in that situation and overlooked my mother’s powerful experience of her own life.
I want to comment on Mark Brazaitis’s account of having ECT, or electroshock therapy [“Locked in to Life,” April 2014]. So often one hears ECT maligned by those who have either had the treatments or have family members who have had them.
My mother had ECT at various times from her forties through her nineties. For her it was a lifesaver. She hated the memory loss, which usually lasted a month or two, but the treatments made her into a happy, functioning woman again. I am grateful for them, even if we do not understand how they work.
Thank you for printing the excerpt from Michael Pollan’s Cooked [“Why Cook?” March 2014]. I look forward to cooking dinner almost every evening. It’s an activity that requires my attention, my creativity and intuition, and my senses of taste and smell. It connects me with people all over the world who are also preparing meals for their families: bent over their chopping blocks and cooking pots, adding, stirring, and tasting to make something delicious.
I took up cooking in earnest only after my first husband died. He had been the cook in our family, and a grief counselor encouraged me to adopt one habit of his to carry forward with me into the future. I chose cooking because it connects me with him and brings some small happiness to those I love.
I laughed out loud at David Allan Cates’s poem “On a Cliff with You” [March 2014]. I showed it to a friend, who snapped a photo of the poem with his phone and sent it to his girlfriend. She texted back that, if she hadn’t been in a crowded coffeehouse, she would have wept.
What are the odds that Rose Whitmore’s essay about her decision to play rugby after the loss of her father [“The Odds of Injury,” February 2014] would be read by someone in rural Haiti who’s never even heard of women’s rugby? And what are the odds that this decidedly non-athletic sixty-two-year-old reader is a mission worker from Pittsburgh, Pennsylvania, where the final scene of her essay takes place? And what are the odds that this reader would find out that one of her fellow mission workers coaches a women’s rugby team back home?
Now, what are the odds that, after this friend reads the piece, he looks up and says, “I was at that match”?
I have just renewed my subscription for two years, though I do not care for your politics. I believe the U.S. is a wonderful country — not perfect, but is any? If you had lived in the Soviet Union under Stalin or in China under Mao, your freedom of expression could have gotten you killed.
As a moderate Republican, I agree with neither the extreme Right nor the extreme Left. I wish your magazine would sometimes provide a less strident viewpoint.
It is time for my prison unit’s semiannual lockdown. We have only one day’s notice to get ready for the compliance check and search, in which we’ll carry all our possessions to the gym to be inspected and “boxed”: anything that doesn’t fit into the 1.75 cubic-foot container will be discarded.
I’m sitting on my floor despairing as I try to decide which issues of The Sun to keep. Each one is so thin; how can they take up so much space? Frantically I copy into my journal the poems and quotes that I want to save, but it is not enough.
“I’ll forget” is my anxious refrain as I reread my favorite interviews, desperate to hold on to this part of who I am. For that is what these precious issues are: a part of me.
I snatch back another piece of myself from the trash and place it in the “keep” pile.