(And Better Ways To Grieve)

“No one gets out of here alive,” Jim Morrison sang (or slurred, depending on which concert you attended).
Why, then, does dying seem like such hard work?
Part of it, of course, is that it is hard work.
“It absolutely is,” says Ira Byock, MD, author of “The Best Care Possible” and new director of Providence Health & Services’ Institute for Human Caring. “It’s a lifelong process.”

‘A Real Kick In The Stomach’

But grief can be hard work, too.

“The times that I’ve noticed are the most difficult are the ones that are unexpected moments of grief,” says Deborah Bradley, director of spiritual care at St. Crispin’s Living Community in Red Wing, Minn. “Those are the ones that are a real kick in the stomach. You’re walking down the street, and you hear someone laugh just like that person you loved used to laugh.”

Given how insidious grief is, then, the most responsible thing to do is to deny it cover—to bring it out in the open. As Bradley says, “You’ve got to take the trash out.”

There are lots of formal programs out there—from Outlook therapy to hospice-based grief counseling—but the best way to help someone grieve is the easiest as well as hardest thing to do, says Judah Ronch, PhD, dean of the University of Maryland, Baltimore County’s Management of Aging Services  program. “You don’t have to say anything. Just stand there and bear witness,” he says. “They’ll get through. Don’t stand in the way of their strength being realized. And if you can’t do it, get help from somebody who can.”

Darn It, God

Bradley agrees that what the living and dying need are someone else’s ears. One of the things Bradley leads at her homes is what she calls (good, Catholic girl that she is) the “Darn It” prayer.

“As a Christian, I know our Jewish brothers or sisters often would raise their fist to God. So I want them to raise a fist and say, ‘Darn it, God.’ And whatever they’re dealing with, I’ll help them form a prayer. ‘I’m confused, I’m frustrated, I’m feeling alone. Are you even journeying with me?’”

Staff And Grief

Joyce Simard is a veteran social worker who helped start the No One Dies Alone program at EPOCH Senior Healthcare of Norton, Mass. It aims to help people die the best way possible—and to help those who love them grieve in the best way possible. Among other things, it offers soothing massages to the dying and keeps a trained staffer in the room at all times, so that no resident has to die alone.
Simard had heard about a similar program in hospitals and pitched staff at EPOCH.
Joyce Simard
“There is a quilt and a flag available to place over the body as it is being taken from the home to the hearse,” she says. “At least one staff person accompanies the body until they are placed in the hearse. The resident was admitted through the front door, and they leave by the front door. … The quilt has signatures of the staff on it. The family and so many staff accompany the body to the hearse, then the social worker reads a brief poem and the body is placed in the hearse.”

As Simard described the idea, one of the staffers lamented that they didn’t have more time to put the program in place, because a resident was just then dying. As Simard recalls it, EPOCH Administrator Kurt Wheaton raised his hand and said, “Well, I’ll take the first shift.”

EPOCH has run No One Dies Alone for three years.

“It’s a hugely important role that you’re serving,” Wheaton says. “You could very well be the last person they’re with as they die—not their wife, not their sister—you. That’s an awesome responsibility. It’s a hugely important role that you’re serving. You’re going to be the last touch that person feels after leading a rich, full life.”

The Reagan Room

Simard points to Vermont’s Veterans Home as an example of a good place to die. Staff there have opened Reagan Room, where relatives can share an ordinary bedroom with their dying loved one.

“It has been there for 10 years now, and so many residents have spent their last days or hours in this lovely setting,” Simard says.

“One wife told me that as her husband was dying she laid next to him holding him in her arms. She talked about the day they met and all of the memories she had of their life together. Then she told him how much she would miss him but that she would be fine, and he took his last breath in her arms.”

They’ve Lost A Friend

It’s not just for the family, though. Mary Jo Kurtz, administrator and chief operating officer of Van Dyk Health Care, says that allowing staff to grieve—and helping them to do it—can be, well, life-affirming.
“It’s a very difficult adjustment, when you’ve been caring for someone for a long time, and then all of a sudden you have the end of a life,” Kurtz says. “And you have to step back a little bit. It’s very hard on the staff: They’ve lost a friend.”

Kurtz speaks with some feeling here. She and her colleagues just had to bury a woman we’ll call “Carol.”
“She was very crotchety. She had been the union leader for teachers for Manhattan, and she could write you a thesis, boy,” Kurtz recalls. “And she was a good friend.

Mary Jo Kurtz“The staff, when they could barely take it anymore because she was so demanding, they’d call me and I’d just go down and play Scrabble with her for an hour or two,” Kurtz says. “It was an eight-year relationship. Not a week went by that I didn’t visit her. She really wanted to speak with professional people. She wanted to live as though her body wasn’t giving out. I’d have wheelchair people coming in for weeks, trying to find the right one, pharmacists coming in.”

The hunt for a mattress took months. When Carol finally was settled into her new bunk, Kurtz emailed Carol’s son to tell him the good news. The reply came, “The lion sleeps tonight.”

Now Carol is dead.

“And it’s hard even to go by her room,” Kurtz says.

Paradox Of Long Term Care

The paradox of death, Kurtz says, is that it’s becoming rarer for providers. With so much of care being transformed to post-acute care, providers have to confront fewer resident deaths than even a generation ago.

But that may make it more difficult, not less, because it makes it easier to pretend that death can be hidden from the job, Kurtz says. “When all the residents were long term, you were developing these relationships that lasted for years. Carol, for me, was one of the last of those kinds of relationships.”

Namaste Care’s Simard is one of many who are convinced that grief can bury a staff, too. In fact, Simard believes that she can tell those homes that deal best with grief—because they’ll have the lowest

Grief doesn’t have to have the upper hand, Providence’s Byock says. If grief is handled openly, and honestly, staff could actually take pride in the way that they help their residents face death, he says.

“When somebody in assisted living or in a long term care facility says, ‘Sadie has gotten worse—she’s taken a turn,’ that really affects everybody,” Byock says. “We cannot stop it. But let’s help this person, to the extent that they’re interested, to feel complete at the end."