Giving hospice patients a home away from home

Volunteer-driven Scott’s House aims to offer care for free as soon as November

Santa Fe New Mexican | 2 Sep 2019 | By Olivia Harlow

Glenys Carl stands in the doorway of a master bedroom in a home that will become Scott’s House. The hospice facility is named in memory of her son, who died in 1989.

Glenys Carl knows all about the heartache that stems from watching a loved one hang onto life by a thread.

In the 1980s, she tirelessly cared for her son, Scott Carl, after he was assaulted in Australia while studying abroad for a semester. For the four years that followed the attack, Carl, a single mother, acted as a full-time caregiver for her son, both at home and in hospital rooms.

Knowing in the back of her mind her son would not survive a three-month coma and multitude of health complications that followed, Carl was exhausted. But, “as a mother … you have to hope,” she said.

Since Scott’s death in in 1989, Carl has longed to open a free hospice care center in Santa Fe, fully aware of the financial and emotional toll that caring for a dying person can take on a family.

Now, after decades of planning, her dream is coming true as she prepares to open Scott’s House, a small center for end-of-life and respite residents that relies almost entirely on volunteers. Carl said the home, which is set to open as early as

November, hopefully will help fill a void in Santa Fe, while at the same time honoring the life of her son and those who helped care for him.

“I owe it to him and to all the volunteers who came forward,” she said, noting more than 300 people offered their services to Scott before he died. “Without them, I could not have done it.”

This faith in people’s willingness to serve is why Carl — named one of The New Mexican’s 10 Who Made a Difference in 2017 — feels so confident in the cost-free model at Scott’s House.

She said she already has a long list of potential volunteers, including those who have undergone nurse-led training through other organizations in town. Many are former nurses or nursing students who can earn extra credit by assisting at the home. All volunteers, she said, will undergo a background check and have support from others on site.

Scott’s House, which will be an alternative to hospitals, nursing homes or a family member’s residence, is a 3,000-square-foot adobe home located off Rodeo Road. Ultimately, it will serve as a home-like environment that offers access to 24/7 care, Carl said. While volunteers and one, maybe two, part- to full-time paid nurses will offer basic assistance, hospice agencies will provide medical services and pronouncement of death as needed.

Funding will come entirely from grants and donations, she said.

The concept isn’t new, Carl said: Historians believe hospice centers could date back as far back as 1065, and Carl said she first learned of the term while growing up in Wales. Hospice arrived to the U.S. about 50 years ago and today there are thousands nationwide.

Although there are hospice offerings in Santa Fe at hospitals and nursing homes, Carl, who is 80, said the cost is significant.

They are “hugely expensive,” Carl said, noting that while some hospice patients die within a week, others might live up to six months or more. If a patient requires 24/7 care, the costs can skyrocket to as much as $18,000 in a month.

“What about the people who can’t afford that?” Carl asked.

The only other free hospice center in Santa Fe is Casa Cielo, a unit at Montecito of Santa Fe that opened in July as part of the local nonprofit Coming Home Connection. Organizers with Coming Home Connection largely credit Carl for the success of Casa Cielo; she founded the nonprofit in 2007 and had started brainstorming a hospice center since its inception.

Without affordable hospice options, families often fill the gap. But it’s a draining, sometimes damaging experience.

“They leave work and leave their income behind,” said Jeff Pine, who plans to volunteer at the home. “It’s such a grueling process.”

Carl knows all too well. She had to quit her full-time job when Scott was attacked and depended on help from neighbors and friends — even Scott’s soccer teammates who raised money via fundraising events — to pay the bills while her son needed care.

Just as daunting was the physical toll.

Every two hours, she’d have to turn Scott so he wouldn’t get bedsores. And throughout the 2½ years it took him to learn to walk again, she’d have to lift him regularly. Scott’s House, she said, “is to give the family a break.” Carl will start by offering space to two or three residents, in hopes that it could eventually expand to accommodate eight people. One of the residents, she said, can be a respite patient, allowed to stay up to two months.

Last week, Carl roamed around Scott’s House, pointing to walls she hopes to paint, carpets she wants to strip and a library corridor she envisions being filled with books. She said she plans to put laminate floors in all the rooms, install shower chairs and upgrade décor. In the center of the house is a common area that will be used as a nurse’s station, and in the backyard is a hot tub, where volunteers can relax when they aren’t on duty.

Outside the home, she walked past a rose garden, watching birds flutter from one back porch to another.

While Pine — co-founder and former executive director of Egis Complete Care Inc., a nonprofit that offers inhome care and support for seniors — said most Americans would rather die in their own home, he noted Carl’s vision for Scott’s House is about as close to a “home away from home” as it gets.

“It offers those people who are really in dire states somewhere that’s safe, peaceful, their meds are taken care of, and loving people are around,” he said.

“It’s a place to give hope,” Carl agreed.