23 Dec My Mother’s Last Gift

by Penfield Chester, Hospice Volunteer

“Eighty-eight is such a nice round number,” my mother said cheerfully. She traced the number, her finger hovering over what my sister had written in purple on the birthday cake. The most important beings in her life — her daughters and husband and dog — were all with her. Gathered by the fireplace in a circle focused on her.

“Think of what you would like to wish Mom for this upcoming year,” a daughter said.
“Can I do it too?” Mom asked. “Can I go first?”
“Go ahead.”
“It’s kind of private ….” She hesitated, then looked up at our family and said,
“I want to die before your father does.”

Her statement sailed out into the room. She leaned back in her chair, as if in relief, yet ready to face any defiance. Her Irish setter Monica rose and went to lean against her knee, perhaps sensing the mood shift in the group.

Even though my mother had dementia, she was lucid much of the time, especially when it came to her wishes about death. She had brought up the conversation at least three times with her daughters.She had spoken for years of not wanting her life to be prolonged at the end, concerned that because of her dementia she might get trapped unwillingly in a body that would outlive her mind. She had asked us to make sure that it wouldn’t happen to her.

Her dependency on my father had increased over the years. “He is my memory, you know,” she would say in an unworried voice, then turn to him for help answering any question we would put to her. One time when she had fallen and bruised her hip, I called to check out how she was feeling.

She replied, “Just a second. Billy? Does it hurt when I walk?”

Her desire to go before him was partially to relieve him of a burden, and also the fear of being left behind in a world without him. As much as she loved her daughters, she must have thought we might not have his patience to care for her. She might have been right.

So four days later when my mother had a stroke, her doctor listened to the account of my mother’s birthday wish.

“She was clear about what she wants. And it matches with what she put in her advance care directives,” he noted. He continued, describing how with rehab my mother could regain some movement and some awareness of her surroundings. But he also pointed out that those with dementia have a much harder time recuperating from a stroke. “So she may make progress and she may not….” The doctor paused for a moment, then said, “And at some point we all have to die….”

My father looked at us. “We think this is the time to let her go.”

My mother’s inability to swallow when last tested in the hospital made the choice easier. She seemed uninterested in eating and drinking. Her eyes followed us, as if a young child before learning to speak, with a kind of trusting wonder. But there was no sign of wanting to communicate. She did not move until her eyes turned to my father, her faithful husband of 65 years. He reached out and wrapped his hand around hers.
“Yes,” he said, “we will honor her wishes not to give her food or water and give her hospice care.”

A vigil of 10 days followed during which the family surrounded her, the time filled with singing and stories, and silent sitting. She passed away just as we were singing the love song that she taught her husband during their honeymoon.

“Not that you are fair, dear, … I know I love you dear, because you’re you.”

Love holding grief grew strong with the power of it, palpable and vibrant. She bestowed to us her end of life wishes, so that we could re-gift her with love and support from four generations of family as she died. This experience gives each of us faith that our family will listen to our wishes in the future, and cradle us out of this world with respect and love. Whether you are 18, 38, 58, or 88, my wish for you this year is for you to complete your Advance Directive as a gift to those who love you as my mother did for our family.