“What’s wrong?” I asked Patty. Patty was Mom’s aide at the skilled nursing home. She wore colorful smocks with floral prints and always smiled, but not today. Aides stood around in quiet clumps with frowns on their faces. Had someone died?
“There’s a patient we can’t feed. Everyone’s upset,” Patty said.
“Why can’t you feed her?” I asked. My heart pounded as I waited for her answer. My mom had been lying in a fetal position for years, unresponsive and comatose. All that was left of her was bones and a swallow reflex. They put a straw to her lips and she sucked. They put gruel in her mouth and she swallowed.
“The woman had a stroke and her Advanced Directives says we can’t feed her or give her water if she doesn’t respond,” Penny said with a sad shake of her head.
“But Penny, that’s what should happen to my mom.”
“Maybe. But we’re trained to feed people. It’s upsetting to let a patient die.”
“Is her life worth living?”
“The woman already decided no. That’s hard for us,” Penny said.
My mother had a Living Will and a Do Not Resuscitate order, but nothing to guide the nursing home in this situation. Mom, both her siblings, and my grandmother had Alzheimer’s Disease by their late 70s. I fretted about being stuck in limbo for many years like my mother and grandmother.
“A patient wrote in her living will that she can’t be fed if she is unresponsive and doesn’t indicate that she wants food,” I told my husband Vic when I got home. “She had a severe stroke and hasn’t responded for a month. Her kids support her directives. It’s legally binding, so the nursing home has to comply.”
“I didn’t know you could do that,” Vic said.
“Me either, but I’m doing it. Are you in?”
“Definitely,” he said. I made an appointment with our doctor, the medical director of the nursing home.
“Would I suffer more without water or food?” I asked.
“No, both are gentle ways to die.”
“Can we do this legally?” I asked.
“Yes,” our doctor said. “I’ll help you word it.
We amended our living wills with these words: “If I have dementia, severe neurological illness, permanent severe mental disability, permanent unconsciousness, or end stage terminal illness, I want comfort care only.”
Under optional additional directives, we added: “If I have irreversible mental damage from dementia or other brain damage and cannot feed myself and do not ask for food or water for one month, I wish to die. Do not feed me food or water by mouth, tube, or intravenously so that I can die naturally and quickly. I ask that this directive be enforced by my health care agent and carried out by those who care for my body.”
Our doctor suggested the one month delay for the sake of those making final decisions. This would give everyone adjustment and monitoring time if needed, but not too much. Rather than an ICU death, I chose an untethered quiet death.
We wrote our directives by hand, signed, and went home with a great sense of relief. I couldn’t help my mother leave her spent body and mind, but hoped to save myself from my mother’s fate.
See Caring Connections page to download living will and advanced directive guides and forms for your state. For more articles about my mother and me, see From Medicine to Mercy or My Mother’s Blessing.