Subtitled: Medicine and What Matters in the End

I recently learned about this book from Bryan at Still Unfinished. I’ve never read much about aging, dying, and mortality in general, and this was honestly the perfect time to come across this book. A couple months ago, I passed my 37th birthday and was soon-after diagnosed with PCOS, insulin resistance, vitamin D deficiency, and moderately high cholesterol. Suddenly I’ve had to start watching individual pieces of my diet instead of eating well all-around, and combined with taking multiple medications/vitamins and my foot injury (which is likely much worse than suspected over the last nine months), life has started to look different. I feel like I’ve crossed a mid-point or dividing line between my younger years and my older years. Don’t misunderstand – I don’t feel like I’m going to start dying any time soon – but I do feel like this is something I need to start considering more seriously. Not just for my own health, but for that of my parents, grandparents, aunts, uncles, etc.

Being Mortal is a very well-balanced look at different parts of aging. I learned a lot about the body’s breakdown even among healthy individuals. I learned a lot about the progress of deterioration, and the way bodies can be affected by terminal disease. I learned a lot more about nursing homes and assisted living, and about hospice care and dying with dignity. While I’m generally on the ball when it comes to things like having a living will, power of attorney, etc, I’ve begun thinking of things in a more concrete rather than abstract way. Maybe I won’t need to for decades, but I think it’s good to start considering things even now.

I have several personal stories to share. The first is about my grandpa, who died in Feb 2007. My grandpa retired in the 90s, not long before the OJ Simpson trial began. It was during the OJ Simpson trial that we noticed something was wrong. My grandpa was a generally vivacious, outgoing, social person, but all of a sudden, he was sitting in front of court TV all day long. The first signs were subtle and probably not something I can really quantify here. Long story short, over the next 12 years, his condition continued to deteriorate. He was diagnosed with Parkinson’s and dementia and other issues. Some days he was coherent and seemed normal. Other times he was paranoid, confused, and/or unable to use the bathroom alone. In the last few years of his life, I never saw him able to interact with people, though I know there were days when he was lucid and able to communicate. By the time the doctors figured out that his problems were actually caused by a severe build-up of fluid on his brain-stem, it was too late to do much about it.

I mention this story for several reasons. My grandpa lived at home for nearly all the time his health failed. My wheelchair-bound grandma, several aunts, and a cousin helped to care for him all those years. At one point, after a surgery, he lived in a rehab center to try to recover. Apparently, his health faded fast while there. It wasn’t long before they decided to move him home against medical advice, where he recovered better and regained a bit of himself for awhile. By the time he was allowed hospice care, his bedroom and bathroom were basically converted into hospital room, to better care for him. The family all got to come by and say goodbye in those last days. I wasn’t there when he died, but those living with him and caring for him were, and at the end, he opened his eyes and was lucid for the first time in days, long enough to tell them goodbye and to tell my grandma he loved her.

As I read Being Mortal, and Gawande discussed various people’s lives and deaths, I was struck by how different my grandpa’s story is. How rare it is that there are family members willing to all work together to take care of a terminally ill person. How rare it is that a dying person isn’t put into a hospital or home so that they can hold onto life as long as possible with every medical treatment available. This is a story that feels out of time for me, and in the few other deaths I’ve seen, it’s not one I’ve seen repeated. Even the other hospice care stories I know involve hospice in a hospital bed.

The other story is shorter, and involves perspective rather than death. There’s a section of this book that discusses human priorities as a shifting array based on how close we perceive time lost. After a near-death accident, during a major health scare, when we grow older and frailer, our priorities shift from expanding outwards (making new contacts, creating things, putting ourselves out in the world) to inwards (spending time with the friends and family closest to us, deepening relationships). While this is only a theory, it feels right to me, and not just from the viewpoint of death. When my family was falling apart last year, I wanted to spend every waking moment with them. Going on a vacation without them was unfathomable. When things have been in happy good times, I’ve enjoyed those times with family too, but I’ve also wanted to seek out new experiences, create new novels, learn new things. All of that went to the wayside when I thought I had no time left – even if that “no time left” had nothing to do with death.

This was an excellent book, and I learned a lot. Thank you, Bryan, for recommending it.

Performance: This audiobook was read by Robert Petkoff. I have nothing in particular to note. It was very well done.