by Jill Ragar Esfeld
As a medical social worker with Catholic Community Hospice, Karen McGuinn had gotten tough calls before.
But the one she got from case manager and nurse Andrea Clark last November was particularly worrisome.
“She said there were these two young boys, and they were trying to plan a funeral,” recalled McGuinn. “And they just really weren’t sure what to do.
“I came, and it was kind of a train wreck. But we got things resolved.”
After his experience with Catholic Community Hospice, Ryan Kruskamp calls its workers “the people in the trenches.”
His younger brother Tyler agrees.
“Me and my brother, we have never been in a situation like this before,” he said. “They knew what to do, and they helped us through the hard times.
“They helped us out a lot.”
Into the trenches
Larry Kruskamp moved with his son Tyler to Kansas City, Kan., because he suffered from hepatitis C and doctors told him his best chance for a liver transplant was through the University of Kansas Medical Center.
But last August, Kruskamp fell while cutting tree branches. An emergency-room x-ray to check for broken ribs showed something far more ominous — a six-centimeter tumor in his liver.
Kruskamp’s first concern was for his 17-year-old son, whose mother was deceased.
He also had an older son from a previous marriage, Ryan, living and working in Colorado.
Kruskamp called Ryan right away.
“I was in Denver, and he called me around my birthday, September 2,” recalled Ryan. “I told him that if things took a turn for the worse, he didn’t need to worry about Tyler — I would be there for him.”
Ryan made plans to come to Kansas City immediately, but got a return ticket for a month later.
“At the time, I didn’t really know how bad it was,” he said. “But I was thinking maybe it wouldn’t be so bad.”
He never made that return flight.
Initially, Ryan and his dad were hopeful. They even made a trip to the Mayo Clinic in Minnesota.
“We were willing to do clinical trials, basically anything anyone wanted to try,” said Ryan. “He was willing to go down fighting.
“But in the end, there was nothing they could do.”
The hospice choice
In the beginning, Kruskamp was completely against hospice.
“I think he kind of looked at it as giving up,” said Ryan.
For the sake of his sons, Kruskamp changed his mind. But with more than 60 hospices in the area, the selection process alone was daunting.
“I think one thing a lot of people don’t understand is they think there’s one hospice,” said McGuinn. “But really they do have a choice. “
Though Christian, the family didn’t have a specific religious affiliation. But Kruskamp felt he wanted a faith-based program.
“He said, growing up, on his father’s side, they were Catholic,” Ryan explained. “Having this come on so quickly, he kind of expressed to me a couple of times he regretted that he hadn’t been more practicing.”
In the end, the family chose Catholic Community Hospice, a ministry of Catholic Charities of Northeast Kansas. It’s the only Catholic hospice in the area, but serves people of all faiths.
“Right now, about 60 percent of our patients are Catholic and about 40 percent are non-Catholic,” said director Tiffany James.
The nonprofit ministry uses an interdisciplinary team approach to patient care, assigning to every patient a nurse, a home-health aide, a chaplain and a social worker.
“Every 14 days, [the team] meets with our medical director to review the patient’s plan of care to see if it’s still effective,” said James.
Because Catholic Community Hospice has a low patient-to-nurse ratio, the service is very personal.
And Kruskamp’s sons found it was quite the opposite of giving up.
“My dad wouldn’t have wanted to be anywhere else but at home,” said Ryan. “They don’t encourage you to die; it’s just a system of support the entire time.”
“Basically, it starts out always with the patient,” said Clark. “You find out what his immediate needs are.
“In this case, [Kruskamp] had a lot of pain management issues. We did a lot of symptom control and taught the family how to take care of the patient.”
The second priority, said Clark, is to make the most of the time that’s left.
“My goal is totally different from a nurse in a different field,” she said. “For me, I try to make every day something special.”
“She was great; she was awesome,” said Ryan of Clark. “Anything that we wanted to try to help our father with the cancer — vitamins or nutrition — she was on board.
“My dad always brightened up when she showed up.”
Despite his sons’ efforts to prolong his life, Kruskamp succumbed to his cancer more quickly than expected. And the family was caught off-guard.
But, fortunately, their hospice team was not.
“We really didn’t have all the affairs in order,” said Ryan. “Our nurse, she was, like, ‘You guys have to do this.’
“I think she could see things were kind of taking a turn for the worse.”
That’s when McGuinn got her call, and she came right away.
“When I got there,” she said, “Larry appeared to be very near actively dying. A couple of his siblings were there, but they were leaving to go back to Ohio.”
The boys were left alone with only their hospice team for support.
“I know Ryan was having a tough time,” said McGuinn. “It was a pretty emotional day.”
McGuinn’s responsibility on the team is to support the patient’s family emotionally, help them with paperwork and funeral arrangements, and inform them of bereavement services.
“If I can make a difficult situation a little less difficult, a little easier to go through for the family, then I’ve accomplished my purpose,” she said.
On her initial visit, she was able to get Kruskamp awake and coherent enough to appoint Ryan his power of attorney. When the call from the nurse came in, she returned and stayed with Ryan as he went through paperwork and signed documents with a lawyer.
Kruskamp had said he wanted to be buried in a family plot in his hometown in Ohio. Because McGuinn realized that, when the end came, the boys would have no way of knowing how to have the body transported or arrange the funeral, she connected Ryan with funeral advocate Brian O’Laughlin, who often works with Catholic Community Hospice to help families with such arrangements.
“I remember Brian telling me, ‘You’re going to be kind of out of it, discombobulated,’” said Ryan. “‘Just give us a call and we’ll handle everything.’
“It’s true; you’re just kind of out of your mind when you lose someone.”
The final hours
“Somebody told me along the way that God gave us tears as a coping mechanism,” said McGuinn. “And so I encourage people to use those.”
As their father was dying, Ryan and Tyler took full advantage of the tears God gave them and were grateful they had chosen the Catholic hospice program.
“It was just another source of comfort for my father,” said Ryan.
“One of the worst parts of dying for him was the fear, the sadness.
“I think the faith aspect of hospice addresses that directly.”
And it was chaplain Brother Daryl Charron who stayed with the family through it all.
“The chaplain was amazing,” said Ryan. “He got here around six and he stayed with us until they came and took my dad’s body.”
“He played music, and my dad liked the music,” said Tyler. “I definitely felt like God was watching over us.
“It helped my dad out, but it helped us out as well — inside.”
With the help of O’Laughlin, the boys buried their father in Ohio in early December.
They’re now back in Kansas City together, shouldering the heavy burden of organizing and managing all that he left behind.
Ryan won’t be making that return trip to Denver for a while.
“As long as Tyler says he wants me here, I’ll stay,” he said.
Tyler, a wrestler for Turner High School in Kansas City, Kan., missed much of his season this year, but still managed to win fourth place at the state tournament — a goal his father always wanted to see him achieve.
“Before my match, I asked him to help me,” said Tyler. “He always wanted me to be the best.”
Ryan, too, has seen an answer to a prayer.
“I prayed a bunch through this whole ordeal,” he said. “And my father not making it, at first I had that knee-jerk reaction that my prayers weren’t answered.”
But then he reflected on how serenely his father had died.
“He really just kind of stopped breathing,” he said. “It was the most peaceful thing you could imagine.
“My prayers could have been answered in any millions of ways that I can’t really imagine. And they were answered in that my dad died peacefully.”
After nine years with Catholic Community Hospice, McGuinn knows exactly what he means.
“Deaths that I’ve been present for, which is quite a few — they’re usually very peaceful, calm,” she said. “There’s almost a good feeling.
“They’re being released from their pain and suffering here and going off to a better place.”
That, said Clark, is what being a Catholic Community Hospice worker is all about.
“You really get your satisfaction when you look at the whole picture,” she said. “And you know you made it happen that someone could die peacefully in the midst of their family, and with dignity.
“The way they wanted to die.”