Longtime Taos cobbler grapples with wife’s coma while running small business

A prayer for Susana

By Staci Matlock
editor@taosnews.com
Posted 8/21/19

Roberto Molina Reyes leans over his wife Susana. He wipes her face with a wet cloth, strokes her cheek, rubs her brow beneath the dips in her skull.

Despierta, he says, despierta.

Wake up. …

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Longtime Taos cobbler grapples with wife’s coma while running small business

A prayer for Susana

Posted

Correction appended.

Roberto Molina Reyes leans over his wife Susana. He wipes her face with a wet cloth, strokes her cheek, rubs her brow beneath the dips in her skull.

Despierta, he says, despierta.

Wake up. Wake up.

Open your eyes, Susana.

Some days, her eyes open and her mouth moves when he touches her and talks to her. This time, her eyes remain closed.

It is early June.

The machines feeding her and helping her breathe beep nearby with a steady rhythm like the beating of her heart. A nurse comes in to replace a bag of fluid on one of her IVs.

Roberto plays one of her favorite hymns on his cellphone and softly sings to her, his voice breaking a little.

He brushes back Susana’s wavy gray hair where a portion of the bone was removed on each side of her skull after it became infected.

Susana has been bedridden since April 4, 2018 after she suffered a double aneurysm – veins in her brain bulged and ruptured – and a seizure while visiting family in El Paso.

Just like that, Susana – who was the seamstress at the shop they ran together in Taos, kept the family in line, tracked the bills, got mad at Roberto if he turned off her soap operas while she sewed and shared his life for more than 40 years – disappeared.

Since then, almost every day, Roberto has closed their small shoe repair and alterations shop off Paseo del Pueblo Sur in Taos around 2 p.m. and drives the 120-plus miles to Albuquerque to see her. On Sundays, he goes to visit her after church. He stays as long as he can with her and then makes the drive back north to Taos in the middle of the night. He is up before 6 a.m., opens his shop at 9 a.m. and does it all again.

Like tens of thousands of others in America who find themselves dealing with the health care system long term, Roberto, 79, has been overwhelmed with medical bills, insurance paperwork, calls from hospital staff saying his wife needs to move to a different facility, health care professionals who give him mixed messages about her condition and the worry about what comes next. And, until recently, he wasn’t allowed to see his wife’s medical records because he lacked power of attorney.

Roberto doesn’t know if Susana is ever coming back.

“It’s been hard,” he says. “But I thank God for everything.”

A simple life

Roberto met Susana Medrano in El Paso in 1969. He worked at a jewelry store. She was one of many young women who walked by the store on their way to college. “She was tiny. She weighed like 105 pounds. She was really short, about 5 feet 4,” he said.

She had long brown hair and always wore long-sleeved dresses or skirts with long-sleeved shirts. “There was something different about her. I don’t know what,” he said.

Before Susana, Roberto dated a woman from Mexico. She became pregnant. “Her family didn’t approve of me,” he said. “They did not want her to marry me.”

He didn’t get to talk to his first-born son for nearly four decades. They finally reconnected and Roberto was getting ready to visit his son in Germany at Susana’s urging when she ended up in the hospital.

Susana and Roberto married in 1971 in El Paso and moved to Taos two years later. Deeply religious, the couple raised their four children in the Taos Assembly of God Church.

Roberto worked different jobs around Taos in construction, as a school crossing guard, a public safety officer for the town of Taos and a lift operator for Taos Ski Valley. For years, in the evenings and on weekends, he also was a referee for high school football, basketball and baseball. He became a youth instructor for Civil Air Patrol and Naval Sea Cadet Corps.

And every Thursday for 30 years, he sold the Taos News at the corner of Gusdorf and Cruz Alta.

He learned his cobbler trade from Trejo Shoe Repair and opened his own shop in 1988. “It’s a great job, something that will never go away,” Roberto said. “I love to meet people and talk to them.”

Susana ran the household with a firm hand, Roberto said. But whatever her children needed, she did for them. At their Alterations Boot and Shoe Repair shop, she handled the sewing and kept the books while he repaired shoes. She didn’t joke around much, but she liked to sing Spanish songs, mostly hymns, and sometimes go fishing with the family. She was an avid fan of any sports her children and grandchildren played. She watched her youngest son, Aaron, in ice hockey and football and cheered on her sons when they played in the town softball league.

The couple’s two eldest sons – Fernando and Roberto – joined the military. Both are Iraq combat veterans.

When they had children of their own, Susan doted on them as well. Her youngest granddaughter, Mikaela, spent weekends with her grandparents. “She loved my mom’s cooking,” Fernando said.

None of the Molinas’ children want to take over the shoe business. “It isn’t for them,” Roberto said.

The couple made enough to cover the rent on their trailer in a downtown Taos neighborhood, pay their bills and keep their car running, but there wasn’t much left over.

Certainly not enough for what came next.

Everything changed

In April 2018, Fernando drove to El Paso with his mom, his sister and his daughter, who had a hockey match. They stayed with family.

Susana kept touching and rubbing her head that evening. “She said she was OK. We didn’t think much of it, just thought she was tired from the long drive,” Fernando recalled recently.

Fernando got up in the middle of the night and didn’t hear anything unusual. An hour later his sister shook him awake and told him their mom was on the floor. He found his mom on her hands and knees in the living room. “It was like she couldn’t see me. I called out to her and she looked at me,” he said. “She kept crying out like she was in pain.”

They rushed her to Del Sol Medical Center. She twice tried to get out of the hospital bed and walk out. She fought the emergency room staff. Fernando said she appeared conscious, but unable to see or talk.

They called Roberto and told him to come.

At the El Paso hospital, doctors told them they needed to operate; blood from the ruptured vein was leaking into her brain. “We couldn’t figure out what would cause it,” Fernando said. “If she had fallen down the stairs, you would think we would have heard it. The doctors didn’t find swelling or a bump on her head.

“She’s been more or less in a coma since.”

The next day, according to Roberto, one doctor wanted to disconnect her from a life-support machine. Another doctor argued against it and said to give her more time.

He called his son Aaron Roberto in Germany. His son, who trains paramedics, told him to wait 72 hours after surgery before making any decisions.

She stabilized and was transported to Albuquerque, where she has been ever since.

Roberto was suddenly dropped into the middle of a paperwork maze. Since El Paso, Susana’s been moved between seven hospitals and long-term care facilities in Río Rancho and Albuquerque. He didn’t know her Medicaid and Medicare insurance coverage – which pay for different costs depending on the situation – had lapsed until he received a $39,000 bill from one of the facilities that made it clear she wasn’t covered.

The drive

Roberto opens his Alterations Boot and Shoe Repair shop at 9 a.m. to begin his work. His little business is squeezed in between a hair salon and a dog grooming shop. Inside, the smell of leather and glue and dust. Boots line the shelves in various stages of repair. Customers trickle steadily in and out of the shop, dropping off worn boots, picking up stitched shoes. He hasn’t turned the television on since Susana ended up in the hospital.

He closes the shop at 2 p.m. on weekdays, 1 p.m. on Saturdays, to go see Susana. Sunday is the day he seeks solace with his church community.

He drives well under the highway speed limit to Albuquerque, even slower in the canyon. Over the long, snowy winter, he drove at a crawl to get there over icy roads.

He says he likes to drive slowly because he enjoys the views.

Sometimes he pulls off to the side of the road for a few minutes to listen to the Río Grande flow by.

He stops once at the same gas station in Española.

When Susana had been at a long-term care facility, he wasn’t allowed to spend the night. Presbyterian Hospital, where Susana has been since early August, would let him stay but it’s too hard because he has to open the shop each morning in Taos.

On the way back to Taos, when he’s exhausted, he’ll sometimes pull into a well-lit casino parking lot in Española and nap.

The stress caught up with him in late May. He fell ill and ended up at Holy Cross Medical Center for a week. Still, he retained his sense of humor. When he got sick, the hospital was so busy he had to wait in Labor and Delivery. “I don’t think I’m having a baby,” he joked.

Roberto would take Susana home to Taos and care for her there, if he could. But he said his trailer isn’t wired properly to handle the power load her machines would require. And he doesn’t know if anyone in Taos has the expertise to operate the machine that keeps her trachea tube clean and moistens the gunk that keeps building up in her lungs.

Holy Cross Medical Center confirmed that the hospital typically can only care for patients a few days; patients with dire medical needs like Susana’s are transported to hospitals in other towns. The only other skilled nursing center in Taos is Taos Living Center and the administrator did not respond to four phone calls seeking clarification as to their services.

Mounting costs

The health care bills for someone in Susana’s condition are astronomical. One week of Susana’s stay at Presbyterian cost $20,626 – just for the hospital. In the end, when the state helped her get back on insurance, Roberto’s portion was still $1,364. He’s expecting more bills “right and left.”

Roberto feels the other costs of Susana’s absence.

Susana always tracked their bills. Without her, things are falling to the side. “I misplace everything and she never did,” he said.

He forgot to pay the electric bill and received a disconnect notice. He went to the utility office and waited half an hour to speak with someone. “They forgot about me. I left,” he said. “I don’t have time or energy to be patient with them.”

He prides himself on being polite. But he finds his patience is thinner these days.

He got into an argument during the summer when hospital staff wanted to transfer Susana to a long-term care facility. He felt pressured to make decisions he didn’t feel prepared to make. He knows long-term care is a cheaper option than the hospital. But he needed time to think.

“They kept saying to me, ‘Do you understand, do you understand,’” Roberto said.

“Finally I told them, ‘Don’t use that word with me again. I understand. I’m not an imbecile.’”

He walked out of the hospital to get air and calm down.

Making decisions

He’s asked to make decisions about Susana’s surgeries, tests, moving her to different facilities and removing her from life-support machines. But until recently, without a piece of paper signed by her giving him power of attorney, he didn’t have the authority to see her medical records. “What is the difference?” he asked.

He said he requested medical records “a minimum of 20 times” between all the facilities.

Twice, according to Susana’s medical records, doctors or other health care professionals at two of the facilities noted Roberto as power of attorney. But, because of federal law, the medical records offices would not give him the documents.

Presbyterian Hospital finally provided the records in August under a state law that recognizes a spouse or child as a patient’s representative, if a doctor has declared the patient medically incapable of making a decision.

A University of New Mexico hospital spokesman said either guardianship or power of attorney documents are accepted. “For a surrogate decision-maker, per privacy recommendations, [the hospital] requires a letter/memo from an in-house caseworker, RN or clinical staff stating the person who is appointed is the surrogate decision-maker,” said spokesman Mark D. Rudi.

But Roberto said no one explained those options when he asked for medical records.

Finding help

People have assisted where they could in the last year. A Holy Cross staffer helped him fill out the paperwork finally to get Susana back on Medicare, the insurance for seniors. The state finally helped him reenroll her on Medicaid in July. When his car broke down, his youngest son, Aaron, loaned him his.

Customers pitch in with food or cash where they can, like Tom Trojnar who stopped by with his son Adam to give Roberto a gas card. “I just know how hard it is on him,” Trojnar said.

Another customer, a doctor from Holy Cross, picked up a pair of shoes Roberto has repaired. “How much?” asked the doctor.

“$20,” Roberto said. He rarely charges more than that.

The doctor gave him $40.

“Thank you,” Roberto joked, “for supporting my pension.”

Members of his church congregation have brought him meals, sometimes driven him to Albuquerque.

Still he often feels utterly overwhelmed with it all. He wishes there had been one person who could have walked him through everything that needed to be done, an advocate.

Karmela Martinez, acting director of the state Income Support Division, which manages dozens of Medicaid programs, said while Roberto and Susana’s situation is extreme, they aren’t alone.

“We see it quite often where people come to the office and say, ‘We don’t know where to start,’” Martinez said. “We try to be well versed to help.”

The state offers 70-80 different services including Medicaid, cash programs and Medicare support services. Though the department doesn’t handle Medicare, they try to direct people like Roberto to the right place for help.

“I would always recommend picking up the phone or walking into a local ISD office and ask for help,” Martinez said.

But with thousands of clients and limited staff, it can take time for the state to help.

Gathering up the forms state offices require – paychecks, back tax forms, proof of income – can feel daunting, especially if the person who kept those records is lying unconscious in a hospital bed. Hospitals have patient advocates to at least answer questions about care but Roberto said no one mentioned them to him and he didn’t know to ask for one.

The patient packets at hospitals where Susana has been sent talk about patient advocates. With enough already on his plate, Roberto didn’t make time to read it. Neither did his children. For them it was just another in a growing stack of paperwork related to Susana’s condition.

When to let go

Doctors have talked to Roberto and two of his sons about taking Susana off the machines and letting her go. Someone from hospice has called.

He has been reluctant to make the decision.

For one, he is uncertain about Susana’s condition. Roberto and Fernando understood a respiratory therapist to say several weeks ago that Susana was half breathing on her own. On another day, a doctor said she’s not going to recover.

“It is two different languages,” Roberto said. “How can I understand, when one says one thing and the other says another?”

He won’t make the decision without his four children. And they are struggling. His daughter is distant, not entirely by her own choice, and he hasn’t talked to her for months.

Fernando says he believes his mom is in pain and though he doesn’t want to, he would let her go, if it meant she could finally rest.

But like his father, he won’t make the decision unless they all agree.

“My dad feels like if he makes the decision, it won’t be God taking her, it will be him,” Fernando said. “The way I see it, God put her in this situation to see if it makes us stronger as a family or if it would break us as a family.”

Roberto believes only God can decide when it is Susana’s time to go. In this lies the dilemma – are the machines keeping Susana alive a part of God’s plan or interfering with it?

“It hurts me to see her there and I talk to the Lord every day, ask him to take her,” he said. “I can’t feel the pain, but I see the pain in her.”

Roberto struggles because he sees glimmers of hope that Susana might return.

More than once when he’s spoken to her or reached out and touched her arm, her eyes open, her mouth moves. What do you want to say to me, Susana? he asks her.

She can’t see him, but can she hear him?

An entry in her medical record says she responds only to pain and cannot follow commands.

How would any of us who aren’t doctors or brain specialists know?

And do they know for certain? He wonders.

Faced with Roberto’s choice, what would we do?

Commitment

It is August.

Roberto misses Susana’s generosity.

“She would never say no,” Roberto says. “She was always helping other people.”

He carries her Bible. Inside, page after page is plastered with the visitor stickers from the different facilities where she’s been. On each, he wrote the date. Sometimes he wrote a piece of Scripture. Some of the stickers are from family who visited – their children, grandchildren.

She has been in the hospital through their 46th and 47th wedding anniversaries.

In all their years together, they never said “I love you” to each other.

Those are just words, Roberto says.

And actions speak louder.

“When you love someone, you do what is right,” he says.

Like driving a couple hundred miles almost every day to wipe your wife’s face in a hospital bed and sing to her.

To learn more about Staci Matlock and Morgan Timm's journey to report Roberto and Susana's story, read the Reporter's Notebook

A GoFundMe has been set up to help Roberto Molina with expenses.

Correction: Susana Molina's maiden name was listed incorrectly in the original version of this story.

Afterward: Susana Medrano Molina passed away  on Wednesday (Oct. 30). 

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