Santa Fe woman among many becoming full-time caregivers for family in pandemic

Aug. 22--There was something about the way her mom looked that Saturday afternoon that led Dena Ducane to make the decision that changed their lives.

It was June 6. Her mom, Rhoda Dobrovich, was staring at her daughter through a closed window at the MorningStar of Santa Fe assisted living facility. Dobrovich, 78, has dementia. She knows her daughter. That is, she knows her daughter is someone who looks out for her, even if she doesn't really know it's her daughter.

On that day, it didn't seem Dobrovich knew anything.

"She was empty," Ducane recalled of the look in her mom's face that day. "It was like nobody was home."

So Ducane brought her mother home.

Now, the 55-year-old Santa Fe resident, who never had children, finds herself playing mom to her mom.

"I did not sign up for this," she said. "I like kids -- but other people's kids."

Ducane's story is not unique. Since the coronavirus pandemic shut down most visitor access to New Mexico's assisted living facilities, family members and others have struggled with how to ensure their loved ones are not isolated.

Tim Sheahan, executive director of the New Mexico branch of the Alzheimer's Association, said statistics show that some 43,000 New Mexicans suffer from some sort of dementia. The pandemic, he said, has led people like Ducane to bring family members home for the duration.

"We don't have statistics or numbers in terms of how many people are doing this," he said. "But we are hearing more and more stories of people who are just frustrated and bringing them [residents] home."

It's a choice between standing by as those residents fade away behind closed doors or becoming their untrained caretaker -- a learning process that can upend home life, love life and work life fast, as Ducane learned.

A self-employed real estate investor, she now puts in early hours on the job, starting around 6:30 a.m., before her mom wakes up some three or four hours later.

She bathes her mother and takes her to the toilet. She feeds her. She plays that old childhood game of bouncing a balloon around with her. She created a "memory basket" with photos, newspaper clippings, a coloring book and crayons, and Play-Doh to keep her mother occupied.

They take walks. They hold hands. They exchange hugs with a doll that mom cradles like a living child.

Chica, a mechanical cat that sleeps on Dobrovich's bed, helps by meowing, purring and moving its head. Ducane named the cat after her mom's dog Chica, who died some time ago.

"Who do you love more?" Ducane asks her mother. "Me, Dawn or Chica?"

Dawn is Ducane's sister, but it doesn't matter. Dobrovich always says "Chica."

Ducane just got her mom another companion, a mechanical dog that doesn't yet have a name.

Ducane, who behind the shield of a protective facial mask looks like a scrappy fighter eager to land a blow on behalf of her mother, smiles with her eyes as she engages with Dobrovich in the living room of the home they share.

"I'm not in denial," she said. "I know I'm losing her. My goal is to keep her healthy and mobile for as long as possible."

Dobrovich, a native of New Jersey who worked for years for an airplane manufacturer, was "an amazing little woman, full of life" who enjoyed social dancing, travel and dogs, Ducane said.

A bout with colon cancer derailed her in 2014. Shortly after undergoing surgery in January 2015, her memory began to fade, Ducane said.

Ducane soon realized her mother, divorced for decades, could not live alone. She moved her mother to Santa Fe early in 2019, and by that March, Dobrovich was a resident at MorningStar.

"It's a lovely place and I felt good about it, and it's only a couple of miles from my house," Ducane said. "I visited with mom every single day, sometimes twice a day. We would have a meal, drink coffee, snuggle in bed and watch a movie together, go walking."

Her mom loved dabbling with makeup, so Ducane would take her to local beauty stores.

"Now I can't get her to wash her face," she said with a laugh.

Nor will her mom wear a mask. She doesn't understand why she has to.

When COVID-19, the disease caused by the coronavirus, began to spread in New Mexico, Gov. Michelle Lujan Grisham put preventive health care measures, including visitation restrictions at facilities like MorningStar, in place to slow transmission.

Ducane said the impact was "unbearable."

Occasional visits outside the closed window of her mother's first-floor residential apartment did little to alleviate the sense of longing and loneliness. Ducane and her partner, Alison Jayne, saw the day-by-day decline in Dobrovich's face.

"She made less eye contact, she was less verbal, she began to look like a zombie," said Jayne, who shares caretaker chores with Ducane in the home they share. Ducane said she couldn't make it work without a committed partner helping her. The couple have been together for about 15 years.

Television helps. Dobrovich likes to watch old movies and sitcoms and sing-along music programs designed for those suffering from dementia or other memory problems.

She likes to eat.

"Everything," she said in response to a question about her favorite foods.

She likes to get in the kitchen and cook, too. "Everything," she said.

Ducane said she is not sure what the future holds. Initially, she envisioned pulling her mom from MorningStar for just a few months. She is still paying to retain the room in case she can move her back there. Now she thinks the pandemic's reach will last for many months more, making such a plan impossible for the time being.

Lujan Grisham -- whose mother resides in an assisted living facility in Albuquerque -- recently eased visitation restrictions. People can schedule monthly outdoor or open-window visits, assuming they do not test positive for COVID-19 and the facility has no positive test cases.

Ducane said that's a step in the right direction but still not enough for people dealing with parents who have a form of dementia. She said the state needs to lay out a long-term plan for people like her.

"This is not just my story," she said. "It's the story of a lot of people. And it's sad."

She has contacted state legislators, city councilors and the Governor's Office with pleas to do something -- anything -- to allow visitors to see their loved ones suffering from dementia in assisted living and long-term care facilities.

Her suggestion: Conduct rapid COVID-19 testing for visitors and then quarantine them for the visit in the room where their loved one resides.

"How can I not be allowed in there with Mom?" Ducane said. "I have more skin in the game."

Katrina Hotrum-Lopez, secretary of the state Department of Aging and Long-Term Services, said in an email Thursday her department is "proactively working with the Department of Health to create safe ways for long-term care residents to interact with their loved ones."

She added she's eager to see and implement a rapid COVID-19 test "as soon as it is feasible to do so."

But for now, all Ducane can do is contemplate the future -- both hers and her mother's.

"I just don't know what I'm going to do next," she said. "This could go on for another year. I don't know how I'll fare on the other side of this. But this is the end of her life. Our elders live for us, they live vicariously through us, and I don't see how anyone could go a month without seeing their beloved parent.

"You have to put everything else aside and put family first."

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