In January of 2016, my father, at the great age of 99¾, was in the hospital on a respirator and it fell to me to be the deciding voice about his future. Should we move him to a nursing home and continue to let the machine breathe for him for as long as he was able to live? Or should we turn off the machine now and let nature take its course unimpeded?
Several times over the years the family had sat around the kitchen table to discuss what we wanted in various end-of-life scenarios. My father was always very clear:
“Do everything you can to save my life. Don’t ever put me in a home.” Over the past few years, each time he was sick, he said, “Don’t put me in a home.” But we never knew to ask each other what choice we would make if all the choices were things we didn’t want.
Now he had congestive heart failure. He was suffering. He seemed confused sometimes. He couldn’t speak any more, couldn’t communicate by writing. We had to guess what he wanted when he was agitated. He’d been in bed on that machine for 10 days. He couldn’t move his body any more, he had gotten too weak. He was fidgety so when no one was with him, they gently tied his hands so he couldn’t pull out his IV or dislodge the oxygen mask.
Seeing him with his hands tied broke my heart. We made sure someone was nearly always with him. He still laughed and gestured and enjoyed visits. He still moved his arm to conduct us when we sang to him.
The doctor said he couldn’t keep my father in the hospital any more because there were no more treatments to try. The doctor told us kindly and clearly that my father would never walk again, so he would need either to live in a nursing home or if he stayed at home he would need two caregivers 24 hours a day. This we could not afford.
When I told my father the only choices left to him, I think he understood but I wasn’t 100 percent sure. He just looked sad and didn’t respond until I asked him if he wanted my mother to decide for him. Then he nodded emphatically yes.
My mother, age 98, said, “I don’t want to murder my husband.” The doctor helped us explain that it wasn’t the same as murder because he would have died already if it wasn’t for the respirator. She understood but couldn’t decide what to do, so she asked my brother and me to decide. My brother finally said, with tears, “Let him go.”
If I disagreed, we wouldn’t do it and he would have to be moved to a nursing home. So my choice would decide my father’s future. I thought that it would be a kind of torture for him to live long in his current weakness and confusion, both of which would certainly worsen. What kind of a life is it if your hands are tied to a bedrail? So I agreed to stop the machine. We decided with compassion, with love, but it still felt devastatingly wrong to make this choice for another person.
A few weeks later, home again after his burial, I was still torn up about it. I looked online to see what other people had to say after having done this. I searched the End of Life Services library. I found what I could at Ilsley Library. There was almost nothing written about this, but what there was, was unanimous: no matter what you decided, you would feel terrible about it.
So ask your loved ones now, while they can still answer you: what do you want if every choice is a bad one? Put their answer in writing so you have it. Ask each other again from time to time over the years.
Barbara “shulamith” Clearbridge offers interfaith spiritual direction and energy work healing. She lives in Middlebury. She is the author of “Finding God/Prayers & Spiritual Practices from Many Traditions,” Natural First Aid; Simple Health Solutions,” “Heal With Your Hands,” and “Recovery: Women’s Words About Healing After Trauma.” Her website is FeelingMuchBetter.org.