A home for hospice

Trillium House Board of Directors seated left to right are Dr. Cary Gottlieb, treasurer; Dr. Jeff Nyquist (former vice president); Dr. Dan Mazzuchi, president; Jackie Martin, secretary. Standing left to right are Craig Chartier, Bob Kulisheck, Sue Kitti, Sharon Fries, current vice president, Dr. Aaron Scholnik and Roger Bentlage. Not pictured: Sam Elder, Dr. Mike Grossman, Dave Holli, Bob Raica and Dr. Larry Skendzel. (Photo courtesy of Trillium House)

by Noah Hausmann

Plans are in place to begin construction of the first hospice house in the Central U.P. this spring, as long as fundraising goals for what will be known as “Trillium House” are met. If all goes according to plan, the hospice house would be open to patients in the fall.

The eight-bedroom house, to be located in Marquette, is intended for patients already in the local hospice-care system. Hospice patients are defined as those who have been diagnosed as having six months or less to live. Simply put, the purpose of Trillium House it to be a comfortable place to live out a patient’s last days, especially the last 24 to 48 hours.

“We wish it was here a few years back,” said Roger Bentlage, assistant treasurer of the Trillium House Board of Directors. “My wife and I are both Lake Superior Hospice volunteers. One in particular that stuck with me was a gentleman who lived out in Skandia. I would go out to his little flat-top, one-bedroom shack—he wanted to live by himself. He did have a son who’d come to visit him once or twice a week, and I’d visit once or twice a week. Other than the couple of years he fought in the Pacific during the war, he lived in Skandia. He was born in Skandia and he almost died in Skandia. He spent the last three years of his life in Jacobetti. There was no alternative. He couldn’t have gone somewhere else even if there was. For nursing homes the cost is astronomical. [Trillium House] provides an opportunity that doesn’t exist anywhere yet in Marquette—which is ironically the largest population area in the U.P.”

There are 75 to 100 people in the Central U.P. being treated with hospice care at any one time, and about 450 people are served annually. About 10 percent of them would qualify for or would want to use a hospice house, said retired Dr. Dan Mazzuchi, president of the Trillium House board.

There are already two main hospice organizations providing care in Marquette County: Lake Superior Hospice and U.P. Home Health & Hospice. Most of this hospice care is given in the patients’ own homes, where a patient would, understandably, wish to spend his or her last days surrounded by loved ones. These two providers are sufficient to meet the hospice needs of the area’s population. Therefore, Trillium would address a different need. If a provider has a patient it thinks would benefit from living in a hospice house instead, the patient would be recommended for stay at Trillium.

There are three main circumstances that Trillium House hopes to remedy: first, hospice patients who don’t have a home or who don’t have an adequate home; second, patients who have a home but no one sufficiently taking care of their needs; and third, patients in need of temporary or “respite” care, to give their caregivers themselves a few days to rest.

Blueprints for the proposed Trillium House, an eight-bed hospice care home in the works in Marquette. (Image courtesy of Trillium House)

“They’ve been working night and day, day after day, and they’ve become absolutely exhausted,” Mazzuchi said. “They say, ‘Can somebody please just take care of him for a couple of days, so we can get some sleep?’ That’s respite. There’s no readily available respite care in the Central U.P.”

The Trillium board hopes to leave at least one room open as a location for respite patients and care workers.

Sharon Fries, executive director of U.P. Home Health & Hospice and vice president of the Trillium board, said open beds at Trillium House would be especially helpful for a patient from an outlying community who comes to Marquette because of a medical crisis. The patient might be treated and released from the hospital but could be in no condition to travel far.

“They don’t have a home here,” she said. “So it makes it difficult where to put the person. When the hospital deems the patient as medically stable as they’re going to be, it’s pressured to send them someplace else, where they’ll get the comfort care they need. A nursing home can become a problem because of the financial dilemma. The hospital does have a respite suite, but it’s not what I would call a home—it’s a hospital room. But Trillium will be homelike, and it’s going to be less than a mile from the hospital, so the transport there will be only a short window.”

The hospice house will also be helpful for family members of hospice patients who can’t afford to quit their jobs to take care of their loved ones, whether they live near or far. Trillium would give the patients the care they need and provide a comfortable environment for patients and families when they do visit.

“Living at home is the best,” Fries said. “But it’s not always an option.”

At Trillium House, the patients’ existing hospice caregivers will continue to provide those services just as if those patients were still staying in their own homes. Furthermore, in the case of a medical problem, Trillium would inform the patient’s hospice organization.

Trillium is licensed as adult foster care and will have a small staff working round the clock. There would be one certified care aide or licensed practical nurse working per shift and a volunteer or two to help with the busier moments, such as meal times, with a total staff of five to seven clinical aides and two administrative personnel. Trillium’s staff of professionals and volunteers will provide “home services,” such as a clean place to stay, cooking meals, handing out medications, turning patients in bed, and bathing them.

“We are not reinventing hospice,” Mazzuchi explained. “We’re reinventing a home for these people and giving them the same kind of attention as they would get at home.”

Each of Trillium House’s eight rooms will have windows and one bed, with space for two family members to stay as well at no additional charge. The building will be structured in anticipation of expansion, so that more patient rooms can be added in the future. The designs also include a mediation room, conference room, three-season windowed patio, kitchen, dining area, and outdoor gardens. Visitors will be welcome 24/7, and visitors may bring pets. Any social activities for the patients would be organized by family members or volunteers.

One aspect of hospice care that sometimes people forget about is the impact on family members, but Trillium House recognizes the importance of those bonds.

“Missing the family is a big thing,” Mazzuchi said. “Thank God we have nursing homes, but a nursing home is not designed for the family at all—it can’t. Each of these rooms is designed so a family member or two can be with them, sleep with them, in the same room, eat meals together, meals made to their own liking, cook them themselves in our kitchens or have our volunteers cook for them.”

The cost to stay at Trillium would be out-of-pocket and would be in addition to the regular amount patients pay to their hospice provider, which is covered by Medicare, however, no patient would be turned away because of inability to pay.

“It would be an extra, added expense for people that would be on a sliding scale according to their ability to pay—and buffered by the fact that we wouldn’t turn anybody away,” Mazzuchi said.

U.P. Home Health & Hospice has offered to pay for its own patients’ stay at Trillium House if those patients cannot afford it themselves, Fries said. In addition, through donations, Trillium itself hopes to assist patients who need financial support, Bentlage added, clarifying that the charity will be limited by economic factors.

“We’ve got some rough numbers on what it’s going to cost to run the business and we’re in the beginning of creating a fund to offset some of those numbers,” Bentlage explained. “But at the end of the day, we’ve got to run a business before anything else, because if a business doesn’t run profitably, then we don’t provide services for anybody.”

Patients typically would be let in on a first-come, first-serve basis to avoid favoritism, but “there may be special needs that arise, and that would be a choice that’d have to be made at the time,” Mazzuchi said.

Trillium is a member of the Omega Home Network a national organization of hospice houses. The association has shared its procedures with Trillium House, which will base its own policies on those recommendations.

“We won’t be reinventing the wheel; we’re going to see what works best,” Pat Bray, executive director of Trillium House, said.

Trillium is modeled after the hospice houses of Omega House in Houghton, and Hospice of the EUP in Sault Ste. Marie, which provide accommodations for seven and five patients respectively and remain close to full capacity year-round.

“It’s just a miraculous thing to see. The community is so aware of what they do. They’ve been a real inspiration for us and mentor,” Mazzuchi said. “We do intend to learn from other people as much as we possibly can.”

Trillium House will be located at 1144 S. Northland Ave. in Marquette. The property has already been purchased, designs approved, construction bids accepted and the building site prepared. The project has been about five years in the making, and has received donations from over 300 people and organizations over the past two years. The estimated construction cost for the facility is $2.25 million, and the board of directors has decided not to begin building until 90 percent of the funds are secured. Trillium House is currently about $300,000 short of that goal.

“We’re really pleased that the response has been as strong as it’s been,” Bray said. “Raising almost $2 million in two years shows that people understand what we’re trying to do. We just need to get over that last hurdle and start building in the spring.”

The slogan of Trillium is: “A home for all of us.” Bray explained, “That’s the point we’re trying to get across. This isn’t a home for somebody else. It could be for you or anybody you know or any family member.”

Bentlage chimed in, “I’m going to reserve a room myself, actually—but not immediately.” He chuckled.

Mazzuchi added, “It’s for us. We’re all going to be there someday. When I get to the end of my life, I want this kind of place to be available, even if it’s just for respite care. One of the very first things you learn when you get involved in hospice is that being alone is the worst thing in the whole world. Nothing is like that. What hospice brings is other human beings to be with you, even if it’s just to hold your hand, to listen to your life story or to read a book. It’s a great blessing.”

Donations can be made online at trilliumhospicehouse.org or by calling 264-5026.

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