Life is pleasant. Death is peaceful. It’s the transition that’s troublesome.
– Isaac Asimov, American science fiction writer and biochemistry professor
My mother’s passing still haunts me one year later. It is what I had expected. But last week, a number of events have kept me thinking about the other side. A good friend let me know that her elderly mother had been very sick and in the hospital for three days. She is thankfully recovering now in her assisted living facility. Another good friend texted me that a mutual friend, whom I hadn’t seen in a few years, was in the ICU, having suffered congestive heart failure and a stroke. And last Wednesday, as I was running an errand, I saw the result of an accident that must have happened mere minutes before I turned on the corner – a covered body on the street, an inconsolable woman standing on the sidewalk, and police cars redirecting traffic. The wail of a fire truck siren followed soon afterwards.
These events made me think about how things can twist and turn in a blink and take you down a different, sometimes dark, path – thoughts that seem to be especially prevalent as the years march on. Can we really ever be prepared for such tragedies?
In the fall of 2008, I attended the Health 2.0 conference in San Francisco as a reporter for my work. I wanted to cut out before the end of the first day of the conference, but something compelled me to stay for the last presentation. Alexandra Drane, founder and president of Eliza, began talking about her sister-in-law, who at the age of 32 was diagnosed with stage IV glioblastoma. I won’t tell you the rest of the story. You can read it and watch it here. Alexandra shared this poignant story amid many tears in the audience – both men and women, including the young mother who was sitting at my table. Alexandra helped found a viral movement, a nonprofit organization called Engage with Grace, which entreats us as family members and friends, with great humanity and love, to discuss end-of-life care. She asked that we answer the five questions brought up on the website, download the slide and share the story, and “get the conversation started.”
I was incredibly fortunate two years later to actually interview Alexandra at the same conference. I excitedly told her how moved I was by her presentation. Then I told her about my father’s passing, and how he died in his hospital room while we were on our way. I had always regretted – and I know my mother did, too – that he was alone. I told her that after his death, my sisters and I tried to talk to her about planning for her own passing, but she would hear none of it. It was bad luck to talk of such things. So that was the end of it. I then told her that after hearing her presentation, I brought it up to my mother the next time I visited her. (Little did I know that four years earlier, in 2004, she had written out her wishes for end-of-life determination. To this day, I don’t know what triggered her to decide what to do and to write it down, but I am grateful that she did.) Again, I was met with a rebuke for talking about such matters out in the open. That was the end of the discussion.
I also told Alexandra that after the conference, when I returned home that evening, I sat down and wrote about the presentation and the movement and send out a group e-mail to all my women friends. David and I filled out our advanced healthcare directive and dutifully sent it out to family members and our physicians. We and our family know what we want to do should we find ourselves in that difficult position.
But whereas advanced healthcare directive maps out what you do or don’t want to have done to you, there is no place on the form that asks you where you want to be when your life is coming to an end. It should. I recognize, however, that even if it did, their wishes may not be fulfilled.
My mother wanted to go home. She couldn’t really talk, but she mouthed it. It was plain to hear through the garble. It was obvious in the shape of her chapped lips. At first, my sisters and I thought she meant she wanted to go home to recover, not recover in the hospital. My sister, whom she lived with, brightly told her she needed to regain her strength before she could come home and, as an incentive, kept encouraging her to do her physical therapy, which my mother refused to do when the therapist came to her room. (My mother would look away, disinterested, and play opossum, but the moment a Filipino caregiver came into her room, she smiled, nodded her head, and weakly waved.) As my mother encountered setback after setback, I realized that she wanted to go home to die. She was done fighting, she was tired, she had told us as much with her eyes and her distorted speech, and she had nodded when we asked her, though we were not ready to let go.
When I was alone with her, on my watch, she told me again she wanted to go home, as if I was her only hope. I awkwardly asked my sister to grant her wish. My sister gave various reasons why it was not a good idea to bring her home. And then remembering Engage with Grace, I asked both of my sisters to watch the video and to consider the message. My sister finally responded. She respected the message, but she could not bring herself to do it. I was sad, but I totally understood where she was coming from. It was her home. It was her decision, not mine.
In the end, it was she whose stoicism failed her the night we let our mother go, not I – the “crybaby” of the family when we were growing up. It was she whose voice broke when we each eulogized our mother at her memorial service. And it was she who has to wake up every morning and go to bed at night in the house in which my mother would no longer walk in and out – her bedroom door, closed and white, which my sister would have to face coming in from the garage, like a canker sore on the heart.
If only we had discussed the matter when we weren’t in such a difficult situation. Maybe the outcome would not have changed at all. I don’t know. And in not knowing, and while still haunted, I can only spread the word. Engage with grace. There is great comfort in knowing what your loved one wishes and that there is time to prepare to honor their wishes.
Engage with grace. Amen.