Copyright © 2019 Albuquerque Journal
Susan Goseyun is up early every day.
“I try to wake up before Jane does,” she said of the 72-year-old sister she has cared for the past 3½ years.
“Because she doesn’t want me to rip anyone off,” says Jane, who suffers from Alzheimer’s, before adding, “I’m only kidding.”
Jane has retained her sense of humor. And a laugh here and there certainly helps, because even though Jane will never realize it, she’s putting her sister through a lot.
“Susan has the patience of a saint,” says Maryann DeStefano, Susan’s friend, who occasionally relieves her of her caretaking duties. “I have a lot of compassion for her because I took care of my mom for two years and ended up in the hospital. It almost killed me.”
Susan recently ended up in the hospital, too, due to a bad reaction to medicine prescribed after she was diagnosed with the symptoms of a nervous breakdown, likely caused by the stress of working a full-time job as a nurse and taking care of her sister for years without a break.
“It’s 24/7. You’re on call every minute,” Susan said. “There are no coffee breaks.”
Susan can’t take her eye off her sister. She did once, and Jane walked out the front door and wandered off. The police found her a few blocks away and brought her home.
Waking up early is just the start of it. Susan says she has an internal alarm clock that gets her up at least twice during the night so she can check on her sister. Sometimes, she’ll wake and bounce out of bed when she hears her sister cry, “Help me.”
The half hour or so Susan is up before Jane awakes for good is her only alone time.
“Once she’s up, you’re up,” Susan says. “Then, she’ll call my name 40 times a day.”
“Can I eat? Can I go upstairs?” Jane will ask her sister, even through there is no upstairs to their home off Zia Road. Susan figures Jane is thinking of their childhood home, which did have a second floor.
Susan does try to keep her sister moving around and her blood flowing.
“You can’t just let her sit. You have to keep her moving around,” she says.
Sometimes, they will sit down together and read a book, just to give Jane’s mind some exercise.
“She can have lucid conversations,” Susan says of her sister.
Jane can also remember words to songs from the 1950s and can recite her lines from a play performed when she was 4 years old – nearly 70 years ago. But when asked, she can’t remember what she had for breakfast.
“I’m the one with memory loss,” she’ll say, aware of her condition. “How am I supposed to know?”
Not only does Susan make her sister breakfast, she watches her sister eat to make sure she’s swallowing and not storing food in her cheeks that she could choke on later.
She’ll help her sister wash up in the morning, do her hair and help her get dressed. She’ll respond to Jane calling her name 40 times a day, feed her again later in the day – but not too early or too late – and get her ready for bed. At midnight, a new day starts and she does it all over again.
“It goes on and on,” Susan said.
A growing need
Susan and Jane are just the kind of people Glenys Carl wants to help by establishing Scott’s House, which would be the first “social model hospice” facility in the state of New Mexico and one of only about 50 in the country.
“Hospice is a great organization, but they’re not a stay-in home service and there is no free-standing hospice facility,” Carl, who has spent much of her long life providing hospice and palliative care, says in a Welsh accent only slightly softened by decades living in America.
No, Jane isn’t dying. But the home Carl has in mind would also include a respite room that would be perfect for Jane and a tremendous relief for Susan, allowing her a much-needed break from her caregiving duties. Jane could be cared for and looked after by trained caregivers and nurses during a monthlong stay.
Sure, Susan could, and has, hired someone to care for Jane while she’s at work. But do the math, Carl says. She has to pay that caregiver and in the end she barely breaks even.
The whole idea behind creating a social model hospice facility is not to replace hospice, but supplement it by providing a comfortable home staffed by volunteer nurses and good-hearted individuals trained to assist patients with daily life functions like bathing, grooming, repositioning and helping with some medications.
“We just have to give them (patients) a place. Then I will bring volunteer nurses in to care for them,” said Carl, who has worked extensively with the nursing program at Santa Fe Community College. “I know it works with volunteers. I’ve done it over and over.”
The main purpose of the home, she says, is to help families who struggle to care for a loved one suffering from a debilitating disease, such as ALS, cancer, leukemia or Parkinson’s disease, with end-of-life care or, as in the case of people like Susan, provide some temporary relief from the burden of being a caretaker on duty 24/7.
It’s a need that’s growing, especially in Santa Fe, where demographics reflect a high population of senior citizens that is only increasing as baby boomers get old.
Residence at the home would be free of charge to terminally ill patients enrolled in a hospice program.
The patients would first contract with a third-party hospice provider to oversee their medical care under a hospice physician. They would also contract with a group like Coming Home Connection – founded by Carl founded 12 years ago, though she’s no longer attached – that provides free, in-home health care to the terminally ill, elderly, disabled, uninsured or poor.
Carl’s vision is to start with one such home. “And hopefully someone else will do another one, and then another one, and another one,” she says.
Local, national recognition
Carl already has her eye on the first home. It’s a 3,000-square-foot, 3-bedroom, 3½-bath home located on a one-acre lot on a cul-de-sac off Rodeo Road east of St. Francis Drive.
One of the bedrooms could be split in two to make it four bedrooms, each with access to a private bathroom, she said. And one of the bedrooms would be dedicated to respite care aimed at giving caregivers a temporary break.
The property is on a walled lot that Carl said is large enough to accommodate a casita that could potentially serve as additional quarters for patients in the future.
Zillow shows that the home is off the market now, but its “zestimated” cost was $620,000. Carl said its owner is willing to sell it to her for $450,000. “I’ve got to raise a little bit more money to buy it,” she said, later adding she’s about $100,000 short.
Anyone who has read the book that tells the story of Carl’s life – and the life and death of her youngest son, Scott – understands that, though small in stature, Carl is capable of big things. She seems to have a knack for overcoming insurmountable odds and obstacles.
“Hold My Hand,” subtitled “A Mother’s Journey,” published by McMillian Publishers in 2005, details her early life growing up in Wales and the trials and tribulations of a single mother raising three children.
The focus of the book, however, is when tragedy strikes after the boys are all grown and each living on a different continent. Just a few weeks after Scott arrived in Australia to attend college, he suffered a traumatic head injury.
No one is sure what happened. He had played, and starred, for his rugby team in a match earlier that day. A superior athlete, he was last seen jogging home that night. Police say he may have been mugged or might have startled a burglar. He was found in the basement of a row of flats, probably 10 hours after he fell or was pushed, with a black eye and in a coma.
Carl traveled halfway around the world from her home in Germany, where she was living at the time, to be by her boy’s side. Doctors didn’t think he’d ever be revived. But through the love of his mother, her sheer determination and persistence, and her incredible ability to rally people behind her – and maybe a little spiritual help from fairies and angels – Scott pulled out of it. And while he was never physically the same and spent the last four years of his life mostly in bed or a wheelchair, Carl said Scott’s character and sense of humor remained intact.
The book chronicles the incredible efforts to rehabilitate Scott, his own will to carry on, and the amazing amount of support Carl got from volunteers, most of them strangers.
Pneumonia and a weakened immune system, along with a terrible misstep by personnel at a London hospital, eventually killed him in 1989. He was 24.
Shortly thereafter, Carl came to Santa Fe to grieve, having been offered a home to stay in by a friend.
Since she has been here, Carl has been recognized locally and nationally for her contributions to the community. Her book won a New Mexico Book Award for best memoir; she’s a winner of a Santa Fe Community Foundation Piñon Award, which honors the work of vital nonprofits and philanthropists; she won the Manhattan Institute’s Social Entrepreneurship Award in 2016 for her work with Coming Home Connection; Money magazine named her a “hero” in New Mexico in 2014; and in 2017 the Santa Fe New Mexican picked her as one of “10 Who Made a Difference.”
“It’s not about the awards,” said Carl, who shuns the accolades. “It’s about the need.”
Carl has been thinking about opening a hospice-like facility in honor of her son since the 1990s after she first came to New Mexico.
“It’s been a long haul for me,” Carl says, reflecting on what she’s had to overcome to make Scott’s House possible.
But it wasn’t until about three years ago that she formed a nonprofit organization under the name Scott’s House.
That was the easy part. She also needed permission from the city to open such a facility, but just how to categorize it under the city’s zoning regulations was unclear.
“They hadn’t seen anything like this before,” Carl said of her proposal.
In a letter to City Land Use Director Carol Johnson last October, Carl presented it as a “Continuing Care Community” and explained how she intended to set it up as a social model hospice facility.
“This is a model that has been developing over the past few years called a social model hospice. There are approximately 50 of these houses that are operating in many communities around the country,” she wrote. “Although there are many hospice organizations operating in Santa Fe, currently there is no free-standing hospice house. There are many residents of Santa Fe that have no family, families that live in other states, families dealing with employment issues or that may be homeless.”
A month later, Carl received a response from Johnson.
“The activities you describe are consistent with the definition of a Group Care Residential Facility adopted as part of the Santa Fe Land Use Code,” Johnson wrote, defining such facilities as “a non-family dwelling unit where care, supervision and services are provided to residents of any age who have difficulty caring for themselves, including the elderly, persons with disabilities and children living apart from families.”
Those would include group homes, community residential care, assisted living facilities, halfway houses and foster homes. Such homes are permitted uses in residential neighborhoods, with limits on the number of occupants.
“It’s easier now that I have permission,” said Carl, who can now tell prospective donors that all she needs to open the facility is the house.
Carl is now pushing to make it easier for such facilities to open in other cities across the state. She is advocating for Senate Memorial 61 now at the state Legislature, which calls for the state Department of Health to study options for regulating independent hospice houses and report the findings to the Legislature’s Health and Human Services Committee by October.
The memorial, sponsored by Liz Stefanics, D-Cerrillos, states that it is “virtually impossible to create an effective, licensed residential hospice house in New Mexico, as the current licensing is under the assisted living regulations, which do not address the specific needs and stresses associated with terminal illness and dying.”
SM 61 states that there’s a need for such facilities, as New Mexico has nearly double the number of elderly residents per capita as the national average. It notes that five other states – Florida, New York, North Carolina, Minnesota and Wisconsin – have already created statutory and regulatory frameworks that allow for the licensing of residential hospice homes.