Amid the health professionals providing hospice care are the volunteer companions — regular folks who just sit and chat, forming a relationship that inevitably will end. But the journey can be rich.
In addition to their mutual love of “The Three Stooges,” Nick Rasmussen and Bob Nell have bonded with talk of home repair, birds that have visited the feeder, wildflowers Nell intends to plant, how to get neighbors to return power tools. Sometimes, too, they talk about dying.
Nick Rasmussen and Bob Nell sit on the couch watching TV with the peculiar expectation common to “The Three Stooges” fans. In a scene with paint brushes and coffee mugs, they know that Larry inevitably will dip his brush into Moe’s coffee. Yet when he does, it’s still funny. That’s the weird brilliance of the Stooges. Even when you see the joke coming from a mile away, you can’t help but smile.
Their own relationship is like that. Nell is dying, which is how Rasmussen ended up on the couch as his hospice companion. Yet despite knowing how their relationship will end, they can’t help but laugh.
“Nick is the first young person that I’ve liked right off the bat,” said Nell, 63, who was diagnosed with liver disease four years ago. Their hospice relationship is unusual in its duration, given that Nell has been in hospice for two years. Yet he awaits no cure. “I’m at the point where I just move on to the next phase.”
Nell’s equanimity shapes how Rasmussen, 34, approaches his visits as a volunteer on the care team. Death, Rasmussen said, actually is more traumatizing “when you don’t know when someone will die. This doesn’t take a toll. It’s a privilege.”
Serving in the creases of care
We speak of “going into hospice” as if it’s a place. It can be, but it’s actually a philosophy of care that shifts the focus from seeking treatment to accepting life’s finality.
Hospice mostly happens where you are, whether in a nursing home, a hospital or your house. Patients spend their remaining days as comfortably as possible, ideally with a dignity that can get lost amid the mechanisms of modern medicine.
Still, the word scares some people. Most people.
“They think hospice means giving up,” said Sandy Nevinski, clinical director of Hospice of the Twin Cities. “Death is the final result, but it’s not our focus. We believe hospice is about living — so you can make the days you have be the best they can be.”
A British woman, Dame Cicely Saunders, developed the idea of specialized care for the dying and in 1967 opened the first hospice. Hospice care in the United States began in 1974 in Connecticut, and has grown slowly, but steadily, especially as the “end of life” movement gained traction in the mid-1990s.
In 2011, about 1.65 million patients received hospice care, according to the National Hospice and Palliative Care Organization. More than four in 10 people who died in the United States in 2011 were in a hospice program.
A volunteer companion’s work lies within the creases of care.
Once a week, Rasmussen pulls up to a Brooklyn Park rambler and spends the next hour or so shooting the breeze, admiring Nell’s latest wood project, gauging his mood, eyeing his color. He doesn’t have a medical role, yet jots notes of each visit for the medical director’s use. He doesn’t have a counseling role, yet listens to Nell’s most personal musings. He is a regular presence in Nell’s life, yet is not a friend, not technically, anyway.
“Bob calls us friends, and we’re not really supposed to be friends — it’s a boundary thing,” Rasmussen said, then grinned. “But we’re a little different than most.”
A prescription for a chat
“How’re you feeling today?”
“I’ll give you six questions,” Nell answered, then shook his head, quashing the suspense. “It hasn’t been pleasant.”