In June 2010 I read a chilling New York Times Magazine article, What Broke My Father’s Heart, by Katy Butler, who described how her father’s heart outlived his brain because a pacemaker kept chugging along. It kept going despite that the rest of his body, due to dementia, was giving up and shutting down. Butler explained how her mother tried to get the pacemaker removed but physicians turned down her request again and again. Also included in the article were descriptions of her mother’s extreme health consequences after years in a caregiving role.
I posted the article under the “must read” section of this blog, where it remains, still timely after several years, and I’ve read it again and again. The reason that I keep re-reading it is that it feels like we all wish for a death without prolonged suffering, ICUs, and electronic shocks to our chests, but most of us do not get what we want.
Stephen Colbert took a few minutes, at the beginning of his June 19, 2013 program, share and remember his mother, Lorna, who died last week in her nineties. Well worth watching. The video is courtesy of Hulu via Upworthy.
When a person is approaching the end of life, we can find no easy answers, no solution that fits every person’s or family’s situation, even when they know a lot about the options available to them.
To illustrate this you will want to read For Hospice Pioneer, Still a Tough Call, by Paula Span at the New York Times New Old Age Blog. She describes the end-of-life period for Paul Brenner, age 73, who spend years organizing and leading hospice organizations around the country. Despite all of this experience, it was still challenging for Mr. Brenner and for his family to engage with hospice.
Over and over I hear from friends and acquaintances how a loved one uses hospice for the last several days or perhaps a week at the end of life, and I am sometimes puzzled about how difficult it seems to be to decide to use hospice. My observation is juxtaposed with my family’s experience — a bit more than three months when my mother-in-law participated in a hospice program that made us all more comfortable and less stressed during those final months of her life.
According to the Post article, “The average Medicare beneficiary spent $38,688 out-of-pocket during the last five years of life.” This is in addition to the portion that Medicare covers. The Post article also features two excellent charts.
Adult children and their parents who are inveterate readers of fiction, especially prize-winning fiction, may want to read two posts at VOXXI (Hispanic Voice of the 21st Century) about Gabriel Garcia Marquez.
The two posts are related and inter-connected, examining the tragedy of a great Nobel prize-winning writer who begins to suffer from memory problems, which may in fact be dementia.