Those Dying Need to Know They Mattered
Those Dying Need to Know They Mattered
Thursday, December 02, 2010
By Brian O'Neill, Pittsburgh Post-Gazette
Renee Ware is dying. Kevin Henry is telling her why she'll be missed. Mr. Henry sits by the bed, leaning over to gently stroke Mrs. Ware's thin right forearm as she keeps her fist tucked beneath her chin.
She can't speak. Her head and neck cancer have put her in the Forbes Hospice inside West Penn Hospital, and her life expectancy at 54 is down to days. Yet, occasionally, something Mr. Henry tells her has her raising her eyebrows, even beginning a smile.
"Yesterday, I talked with Don," Mr. Henry says, mentioning her older son. "So I asked Don to tell me all about Renee, and he did, and I got to tell you, Renee, it was gorgeous stuff."
Mr. Henry, 61, the bereavement coordinator for the hospice, has been doing such work for 20 years, and in recent years he has developed a care method he calls Life Validation. He has presented an 11-page paper on the subject to a national hospice organization, but he can sum it up pretty simply:
"For persons dying, like persons living, the unheard cry may be, 'Has my life mattered?' "
The caregiver's job then, is just as simple: "Tell the story like it matters." Because they all do.
First Mr. Henry has to get the story. So he asks loved ones questions like: What does she love about life? What do you love about her? Or he'll ask for three adjectives to describe the person.
The most common answers to that last question are "stubborn," "good sense of humor," "generous," "kind," and "Steelers fan." But Mrs. Ware, who made her living as a private nurse, is different.
"You know what Judy said?" Mr. Henry tells Mrs. Ware. " 'Bubbly,' she called you. 'Reliable,' she called you. That got my attention. I know how hard that work is.
"Taking care of seniors like Mr. B," he continues, without notes, remembering one of the anecdotes he's heard about her. "Mr. B, who had a little thing for you. Maybe he loved you."
I'll talk later with Don Ware, 39, her son, who walked through the rain from Garfield to see the woman who's clearly his hero. He says he has his mom's soul. He once gathered a bunch of homeless people Downtown and brought them to lunch at the McDonald's on Smithfield Street because that's the kind of thing his mother would do.
She had him when she was 15. She also raised children that weren't hers, he said, and would lend a few dollars if a person needed that or provide a roof for the night if someone needed that, and tell the same person to "quit acting like a damn fool" if that was the proper remedy.
"She's everybody's mom," Mr. Ware says. "Ask anyone in Wilkinsburg, Homewood. If you mention 'Renee,' that's her, that's my Moms right there."
Mr. Henry will talk to Mrs. Ware for 17 minutes, reminding her that everyone called her "Ma"; telling her that her son's "eyes light up when he talks about you"; telling her how much Don appreciated knowing that, through some pretty tough times, "there was a home to come to."
"Good smells coming from the kitchen and somebody in charge," Mr. Henry reminds her. "You made sure your family, and everyone around you, knew they were cared for. That is an exquisite legacy to leave to all these people. That is one fine legacy."
Mr. Henry has learned to calibrate his words with a patient's out-breaths, but the magic of his method is that anybody could do this. As he wrote in his paper:
"For persons dying, the emotional experience may include anxiety and fear, the medicine for which is calm, and trust."
Even unresponsive patients may be processing what they hear; most aren't brain damaged. They may sleep most of the time, but in the last hours of living, awareness may exceed the ability to respond. So we should share those details, those brush strokes that make each life unique and sacred to those left behind.
"Our lives are more felt than thought," Mr. Henry wrote. "A cook's time in the kitchen isn't just about making meals; it's about the heft of the pots, and the gleam of the pans; about the sharpness of a paring knife's slice through carrots, and the pleasure of the just-right smell of the saute; about the clink of the measuring cups, the fold of the cloth of napkins, and the rush of heat of the opened oven door."
He doesn't feel the need to go that deeply at the bedside, though. A simple phrase like "good smells coming from the kitchen" is likely enough for Mrs. Ware to make her own connections.
"I had to tell you what I know about you," Mr. Henry tells her, "because it's all so beautiful. It's all beautiful stuff. Good work. Good work. ... Your son and your cousin, they were very clear that you are who you are. Who you are is beautiful."