Talk about coincidence. When I planned this issue earlier in the summer, I didn’t know about the book my own book club was going to discuss in September:“Being Mortal: Medicine and What Matters in the End” by Atul Gawande.
But wrapping up content late last month, it was clear our discussion begged to be shared so I asked if I could take some notes – all being agreeable women, they consented. First, the book. It was published in 2014 to rave reviews – one in the New York Review of Books read, “Gawande has provided us with a moving and clear-eyed look at aging and death in our society, and at the harms we do in turning it into a medical problem, rather than a human one.”
In a nutshell, the book is highly readable with many personal stories about aging and end-of-life issues. The author-physician also shared his experience with his father’s last years and his own feelings of inadequacy in many situations because, like most doctors, he wasn’t trained to help patients and their families make difficult decisions. He also writes about innovations in assisted living and nursing homes, all in a fascinating, storytelling format that keeps the reader engaged.
Now, the book club – we’re all white females, ranging in age from mid-60s to mid-80s. We rotate houses and whoever is hosting chooses the book.
Diana, 75, says she chose the book because “aging has been on my brain.” She led the discussion, asking us to first share our experiences with caregiving. These ranged from caring for a beloved aunt and uncle, both with severe dementia, to husbands and parents with lingering illnesses. A couple of us were long-distance caregivers for several years.
“My responses were all reactive,” said Lynn, reflecting on her aunt and uncle. “You shut your mind off and put one foot in front of the other.” Now she worries about every slip of memory.
Donna’s husband had lymphoma and they thought he was in remission. After the last chemo treatment, the doctor, trailed by students at Emory, said “it had a slight effect.” They were shocked and came to understand the doctor meant that her husband was dying. “The book underscores doctors don’t know how to be honest, and medical students were learning that.”
Several of us had dealt with hospice, one for as long as a year, and had nothing but praise. Brenda, a retired geriatric nurse-educator pointed out that all the hospice nurses she interviewed had been former ICU nurses who had often seen the “indignities and futility” of intensive care at the end of life. At age 80, she is moving out of state to live near her daughter so, sadly, we’re losing her from the book group.
“I want to move while I still have the ability to create my own social life,” she explained. “Your children can be there for when you need help, but they aren’t your social support.”
Aileen, 85, said the book got under her skin. “My kids have different ideas for me. I don’t know what I want but I’m coming to the point when I have to decide.”
All of us agreed “it’s a very important book.” Diana wrapped it up with: “I want my son to read it.” There was much we didn’t have time to discuss so we’re making plans to meet again very soon. It’s the first time a book has inspired a second gathering, and something tells me there may be more around this topic.
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