Family faces high costs to let loved one spend last days in her own historic home

“She left to go to church and she never came back until last week,” Acton said in a November interview.

It was 87-year-old Eloisa Bustos’ dying wish to be able to move out of an assisted living facility and back into her home. She is now in hospice care.

“We’re just going to be happy every day and share the love” for as much time as she has left, Acton said.

Bustos, diagnosed with Alzheimer’s disease, could still rattle off the full address of her home on Don Cubero Avenue when she walked up the ramp to the front door Nov. 7, supported by her son-in-law Doug Acton and a walker. She was able to return after renovations that came with high costs and some bureaucratic headaches.

“I’m so happy to be here,” Bustos said in a video Acton took to document the occasion. “You don’t know how happy I am. Thanks be to God.”

Facility hopping

For a long time, “happy” is a word the family didn’t hear from Bustos very often. The devout Catholic went to Mass at the Cathedral Basilica of St. Francis of Assisi one day six years ago and had a medical emergency, tearing her aorta and collapsing in a pew.

She was taken by ambulance to a hospital where she underwent intensive surgery, Acton said, and the family was told she had only three years to live. Bustos beat that prediction but cycled through several senior living facilities because she had become too frail to live in her historic home unaided.

Bustos spent two years at Brookdale Senior Living, which cost the family $5,500 a month. They transferred her to Pacifica Senior Living, which at $4,500 was one of the most affordable facilities in the city — but, the family discovered, also was beset with problems.

The troubled facility announced in the spring it was transitioning to a 55-plus independent living community — now called Sierra Blanca Apartments — giving most of its residents just a short time to find other housing arrangements.

Bustos’ family moved her to MorningStar Assisted Living & Memory Care of Santa Fe. Acton spoke highly of the center but said it was a steep jump in cost: “We went from paying $4,500 a month for a suite at Pacifica to $6,700 for a room.”

In the meantime, work was underway to make the home Bustos and her late husband had purchased in the early 1970s livable for her again, which took a tremendous amount of work.

“I could have bought everyone in my family a brand-new car” for what it cost to remodel the house, Acton said, estimating the total at more than $300,000. She credited Doug Acton’s work as a paramedic in the film industry for keeping the family afloat financially.

“If it wasn’t for him, none of this would be possible,” she said.

Work included fixing the basement after the radiator broke, causing flooding; installing a new HVAC system; converting the shower into a bathtub; installing a ramp; and redoing the stucco, which had begun to crack so much a gap in the front room was almost large enough to see through.

Along with the cost, Acton said the family ran into problems with the city of Santa Fe’s Historic Preservation Division, which she said initially refused to give the family permission to install a ramp because it would alter the facade of the historic home. Built in the 1950s, the home is designated as a “contributing” property under city ordinances regulating buildings in historic districts.

“I was like, ‘Can I charge admittance?’ ” Acton recalled thinking at the time.

The ombudsman for the New Mexico Aging and Long-Term Service Department wouldn’t allow Bustos to leave MorningStar unless a ramp was installed outside her home.

The Care Transitions Program, previously housed in the Ombudsman’s office, is now managed by Adult Protective Services.

The program helps residents living in long-term care facilities safely transition back into community settings, said department spokesperson Joey Long said, or into another residential facility.

Ombudsmen serve as “dedicated advocates for residents’ rights, ensuring that residents’ voices are heard and their needs are met,” Long wrote in an email.

Acton said the state ombudsman also wouldn’t release Bustos from MorningStar unless the family could show they had around-the clock medical care, which would have cost more than keeping her at the center.

However, because Doug Acton, a retired Santa Fe Fire Department deputy fire chief, is a licensed paramedic and the Actons are now living in the home with Bustos, the state agreed to release her after the ramp was finally installed.

Historic rules create delay

Acton said she was frustrated by the holdup the city created in moving Bustos back into her own home, which forced the family to spend thousands of dollars at MorningStar for each additional month of delay.

“That isn’t a call the city of Santa Fe should make,” she said.

The family eventually got permission to install the ramp, but Acton said the experience has soured her on the city’s oversight of historic buildings.

“Don’t make it so hard that when you’re elderly, that you can’t get back home,” she said. “Because that just defeats the purpose of working so hard to own your home.”

A city official asked if the family planned to remove the ramp after Bustos died, she added, a question she found insensitive.

Santa Fe Planning and Land Use Director Heather Lamboy said the request to install Bustos’ ramp went through an administrative approval process in October. Staff determined the family did not need a construction permit to install it, but did require a safety inspection, which has yet to be scheduled.

“We told them to go ahead and install it and schedule an inspection so we know everything is safe,” she said.

Enforcing historic regulations with consideration for accessibility requirements under the Americans with Disabilities Act is a balancing act, Lamboy said, and city staff work to find solutions that meet everyone’s needs.

“With historic buildings, the intent is not to change what we call primary facades or the facades that have been designated by the [Historic Districts Review] Board as having the most historic interest,” she said.

‘She’s someone special’

The youngest of eight, Bustos worked for the National Park Service for 30 years and then worked 17 years as an office manager at the cathedral, retiring at 79. When this year’s Fiesta Court visited MorningStar in September, Acton said they immediately flocked to Bustos.

“They all wanted a blessing; they all wanted hugs,” Acton said. “All the people [at MorningStar] were like, ‘Who’s your mom?’ And I said, ‘She’s someone special.’ ”

Despite all the challenges of moving her mother back home, Acton said she wouldn’t trade it.

One day in April, when Bustos was still living in a suite at the former Pacifica Senior Living, she had sat quietly, not appearing to have much awareness of her surroundings, while others spoke about their frustrations with the troubled facility.

It was a far cry from her affect on a day in mid-November as she visited with family in her own home, occasionally interjecting into the conversation and smiling as Acton’s dogs Mister and Shug scampered around the room.

Once a week, a nurse and a social worker from the hospice care agency Compassus come by to check on Bustos, and another woman comes to shower her twice a week. A spiritual adviser also comes by every week, who prays with her and gives her Communion. The experience has brought a tremendous amount of peace to the family, Acton said.

“It should be like that for every elder, if you ask me,” she said. “They earned it.”

Now that her mother has entered hospice care, Acton senses she doesn’t have much more time, something she said she’s trying to prepare herself for emotionally.

“I’ve been a little nervous because I know it’s coming, and I know it’s coming soon,” Acton said, starting to tear up. “But at least I got her home, and that’s what matters. I got my mom home.”

This story has been amended to reflect the following correction. A previous version of this story incorrectly described the relationship between several agencies in the New Mexico Aging and Long-Term Services Department. The Care Transitions Program, previously housed in the Ombudsman’s office, is now managed by Adult Protective Services.