If there is one book I have recommended over the last five years, it is Atul Gawande’s Being Mortal. Immersed as I am in caring for an older parent and surrounded as I am by friends and colleagues sorting out the same questions, this is no surprise. But what is surprising is that in spite of how much this book has helped me, I have to return to its lessons again and again.
When my parents entered their nineties, I would return home to the house they shared since 1973. But instead of envying my mother’s ability to have everything sparkling clean and perfectly organized at every moment, I noticed that every treasure in their home turned from lovely memento to potential landmine. Persian carpets were tripwires. The marble coffee table brought back from a tour in Naples, the perfect blunt object for a head injury. Each stair might as well have been the Hilary step. My anxiety skyrocketed the moment I walked in the door. My goal in life became to convince them to move to a retirement community of their choosing. There is a lovely one within a mile of their home, a place where many of their friends have lived, with low staff turnover, and everything they would have needed. There are terrific places near me in North Carolina. My father said no. Again and again he said no. When I asked him what he thought it would be like to live in such a place he compared it to the Bexar County jail and told me I would essentially kill my mother if I made her move. That was a conversation stopper.
And then I read Being Mortal. Not only did I read it, I holed up in a tent in the North Carolina mountains at an annual multi-family camping party to finish reading it while everyone else socialized. Early in the book, Gawande describes his grandfather, a gentleman over 100 years old living in India. Gawande writes that, in contrast to our stated goals for elders in the U.S., the stated goal for his family in India was to help the centenarian grandfather do whatever he wanted – in this case, to ride his horse on a daily basis to inspect his farm. This meant that the family secured a very docile horse and walked the horse with the grandfather on it, every day. Notice what they did not do. They did not say, “You’re too old to ride a horse.” Or, “ There’s no horse that is appropriate for you to ride.” Or, “Sorry, it is just not safe for you to ride a horse.” Rather, they recognized that at 100, there is no “safe” and the only thing they could really do for their aging patriarch was to give him what he wanted at what was surely the end of his life. The rest of the book is very good and completely compelling, but if you read no further than this anecdote, I wager it will change you as it did me. I quit asking about the retirement community, stopped seeing the rugs as ticking time bombs, and stopped worrying about how I, an only child living across the country from them, would manage it when disaster came. And several years later, it did. My mother fell and broke her hip. But guess what? She did not trip over the rug, nor did she hit her head on the coffee table. She fell leaving a friend’s birthday party at a lovely restaurant after a lovely meal. And she didn’t trip over anything, just lost her balance and fell. When she did she was perfectly coiffed and sporting a smart new dress. Three and a half weeks later she was dead at 93. There was suffering in between to be sure. But she died as she lived and there is something to be said for that.
Gawande’s work highlights the competing values we hold but rarely articulate when we are caring for elders. In truth, it’s not much different than the calculus made when caring for children – particularly adolescents. Safety versus autonomy. In the U.S., we lean towards safety, always attempting to mitigate risk particularly for the old and the young. We long for safer playgrounds and safer old age. In the teen years, parents are challenged to know where the line is between allowing young people to make their mistakes versus keeping them safe from their under developed frontal cortexes. Perhaps this is why Being Mortal hit such a chord when it was assigned as UNC Chapel Hill’s 2016 summer reading book for incoming first year students. When I heard about the assignment, I was perplexed. Sure, I found the book meaningful as an adult child of older parents, but what would an 18 year old see? But see it they did. In the discussion section I co-facilitated, the first year students had read the book cover to cover, were eager to talk about it, and planned to share the book with their parents and grand parents.
t’s now been almost two years since my mother’s death and my dad, now 98, still lives in the house with the rugs, the coffee table, the full catastrophe. And although he picked up a walker the minute my mom fell and has not put it down since, he is weaker, requires more help, and still says no when I talk with him about moving. I promised my mother I’d look after him. “Make sure he turns off the coffee pot!”
She thought, as did I, that this meant he would move to North Carolina. I brought it up days after her funeral and he said no. At first, I thought we needed to give it time, no sudden changes, yada yada yada. But his position has remained stalwart. No, to moving across the country and no, to leaving his house. He explains, “Here, I am surrounded by everything that reminds me of my good wife and our long life. I know just where everything is. So keep me on the list at the retirement place and then, when I decide I need it, I’ll go.” If I press, he describes moving into assisted living as moving into a “rat’s nest.” Again, a conversation stopper.
People tell me I need to take a firmer stand with him, take the reins, force the issue. It’s true there have been some problems of late – medication mix ups, a couple of spills that resulted in waits on the floor until someone could arrive and “right the ship” as he cheerily puts it.
But although he is weaker in both mind and body, in spirit he is strong. He is still the one who walked with me for hours in the Mark Twain National Forest naming every tree, who guided me into the hills near the farm where he grew up to drink from spring water that came sweet and pure from the earth, who showed me how moss grows and how it might help how to find my way should I get lost. He is still the one who liked to take the scenic route home from church and stop by what he called, “the land of many flowers.” (Check out the San Antonio Botanical Gardens when you have the chance.) He is still the one who would write a poem in walnut shell and hang it on the Christmas tree for my mother each year. (I always wanted one too. But they were just for her.) He is still the one who, in response to some long forgotten heart break, told me, “Worry and cry as hard as you can about that young man for all of five minutes because that is more than he deserves.” And he is still the 19 year old who went bravely off to war when duty called, who saved his ship when it was lost, and fought for your freedom and mine.
Who am I to tell him what to do with his last days, months, or years? Who am I to force him to do anything so that I, and others who care about him, can be assured that he is safe? When I push, he fights hard. And the truth is, although I know I could prevail it is a battle I don’t want to win. It would diminish him and he deserves better than that. And perhaps, I can be grateful l that he’s not asking to ride a horse.
Cross posted at https://mimichapman.blog/2019/05/06/living-atul-gawande/