Everything is in its place at Carolyn and Royce Stewart’s pin-neat south Santa Fe home.
The cupboards are labeled: mugs, bowls, baking supplies. Labels in the bedroom remind Royce Stewart, 75, where his athletic socks and undershirts are kept.
Carolyn Stewart said the labels are part of the couple’s united front in their battle against Alzheimer’s disease, a progressive form of dementia which starts with mild memory loss.
“We both do the laundry … and it gives us a fighting change to get things in the right place,” said Carolyn, 69.
Unfortunately, teamwork, labels and meticulous planning cannot help Royce Stewart, a retired electrical engineer, remember the word “week,” how many children the couple have or how he met his wife of 30 years. The Stewarts are one of tens of thousands of New Mexico families grappling with the devastating effects of Alzheimer’s, which eventually leads to serious cognitive dysfunction and death.
In New Mexico, 43,000 people over age 65 are living with the disease, according to the state chapter of the national nonprofit Alzheimer’s Association. By 2025, that number is expected to rise to 53,000.
Other numbers are equally staggering: 58,000 caregivers (many of whom are family members), performing 158 million hours of care, valued at $2.6 billion annually.
According to the state Aging and Long-Term Services Department, 3,074 New Mexicans died from the disease between 2017 and 2021.
The battle is among the most painful, confounding — and heartbreaking — in New Mexico’s health care picture.
Royce Stewart’s diagnosis — with mild cognitive impairment in 2018, then Alzheimer’s in 2022 — changed nearly every aspect of the couple’s lives, Carolyn said. It brought them back to Santa Fe last year, where they had lived from 2009 to 2014 before returning to the Chicago area for a time to be closer to family members.
“If you are going to deal with a challenging situation, you want to be in the most beautiful place in the world, and that’s Santa Fe,” she said.
Royce’s mother had the disease — researchers have determined Alzheimer’s has a genetic component but can also be the result of lifestyle and environmental factors — so the couple were better equipped than many to deal with its effects.
The Stewarts sought out clinical trials. Royce participated in two and started a third but dropped out after traveling back and forth to Chicago for appointments became too difficult.
Carolyn Stewart — formerly a director of tribal relations for a renewable energy company — has devoted herself to learning as much as she can about the disease and maximizing her time with her husband.
“You want to educate yourself in every way possible about what is happening because you can’t really know this unless you’ve experienced it,” she said. “As you think about the future, it can be pretty scary. Because you don’t know what is going to happen. You don’t know what the next day is going to be like and you don’t know what the next year is going to be like. So the anxiety level associated with this is high.
“You have to think early about estate planning in a way you never did before, put a power of attorney in place, and try to understand what your role as a care partner looks like,” she continued. “Because that’s not something any of us really think about, and there are a lot of different approaches.”
Carolyn’s strategy has been to focus on what her husband is still capable of doing and building a network that includes caregivers they eventually may need and and people who are in the same situation.
“There are so many families and couples dealing with the same thing here,” she said. “And so many resources here in town in terms of education and support groups.”
The hunt for help
That web of support includes Life Circle Adult Day Center, a private nonprofit where Royce Stewart goes Monday, Wednesday and Friday mornings to visit with other people who have Alzheimer’s or other forms of dementia and participate in activities designed to keep his brain engaged.
“We want to keep people active because if they’re active physically and cognitively, their quality of life is better and their chances of being able to stay home longer improve,” Life Circle Director Lea VanMerkestyn said in a phone interview Thursday.
“Research has shown when people are lonely or left alone, dementia can increase,” she said. “So being able to come to a place like ours where they get social interaction helps them have a higher quality of life for longer.”
Places like Life Circle — which opened in May and charges on a sliding scale but costs about $16 per hour — are out of reach for many New Mexico families because such services aren’t covered by Medicare or most private insurance carriers.
“One of the things that is critical is funding from outside sources,” VanMerkestyn said. “If families were to pay for it out of pocket, especially for seniors who don’t have a sufficient retirement fund, it would not be affordable, even though it’s much lower in cost than if they go into a long-term care facility. If they were to hire a private caregiver, usually they are going to be paying even more than that.”
VanMerkestyn said she’d like to see the Legislature fund more centers like Life Circle so more New Mexicans can stave off the symptoms of the disease and more caregivers can take a break from the constant vigilance required to care for loved ones at home.
According to New Mexico’s State Plan for Alzheimer’s Disease and Other Dementias for 2022-25, more than 50% of caregivers in the state had at least one chronic health condition themselves as of 2020, and more than 34% reported suffering from depression.
“The level of need is overwhelming,” said David Davis, a caregiver trainer and executive director of the Memory Care Alliance for Northern New Mexico, a nonprofit that offers support to caregivers and patients.
“People need education. They need ongoing community support; they need resources. And every mile you get further away from Albuquerque that gets smaller and smaller,” he said. “People live in rural communities either by choice or by tradition, but there are limitations, and that’s one of the things we’re trying to change is to reach those folks.”
Davis said a state-run waiver program offers some financial assistance to give families a break or provide some pay for relatives who serve as full-time caregivers but noted it’s so difficult to navigate “it’s almost designed for people to fail.”
“I’m actually in the process of hiring a full-time care navigator that will be able to assist families with all this because they can’t do it on their own,” he said. “It’s difficult … every day, week or month that goes by, things get tougher and tougher, and the odds of somebody being able to navigate all of that get slimmer and slimmer, if not impossible.
Davis said he worries for those who take care of loved ones suffering from Alzheimer’s.
“It ends horribly for the caregiver,” he said. “They can’t recover physically, mentally, emotionally, financially, after they’ve lost their loved ones. The whole scenario just ends up being overwhelming.”
State Aging and Long Term Services Secretary Katrina Hotrum-Lopez said in a phone interview she has experienced firsthand how devastating Alzheimer’s can be because her mother was diagnosed with the disease.
The disease brings a sense of devastation and panic most people will never know unless they experience it themselves, Hotrum-Lopez said.
“We have caregivers who are dying before or shortly after patients,” she said.
The department is requesting a $20 million legislative appropriation to the Kiki Saavedra Senior Dignity Fund — named after the late legislator and established with $7.3 million in 2020 to improve services for seniors — part of which will be used to increase adult day services across the state, according to the agency’s budget request.
“We need to do a better job supporting existing [day centers] and building more out so they have more capacity,” Hotrum-Lopez said.
The agency also is requesting $79,300 to hire a second full-time employee to conduct outreach, collect data and work on grants in the department’s Office of Alzheimer’s and Dementia Care — which currently only has only one employee.
“Getting the full budget request of the Aging and Long-Term Care Services Department is our top priority [for the legislative session],” Tommy Hernandez, public policy director for the Alzheimer’s Association, New Mexico Chapter said.
Hotrum-Lopez is one of several state of officials scheduled to speak at the Alzheimer’s Associations Advocacy event Monday at the state Capitol, which will start at 9 a.m. with speeches in the Rotunda followed by an invitation-only meeting with Gov. Michelle Lujan Grisham.
Hernandez hinted the association may also make a surprise announcement at the event, which advocates, caregivers and people living with Alzheimer’s are encouraged to attend.
If there is a silver lining in her husband’s diagnosis, Carolyn Stewart said, it’s that they spend more time with one another than ever before.
She used to cook and Royce would clean up. Now, they complete both tasks together.
“That’s not how we used to operate,” she said. “We were both pretty independent … [he] had [his] chores and I had mine. Now we do all of that stuff together. Which is, I think, a good way of doing it. Everyone is different. That works for us, and I think that reduces the anxiety level and makes us feel like we’re in this together.”
“Because we are,” Royce Stewart said.
By Phaedra Haywood firstname.lastname@example.org Updated Feb 6, 2023
This article was originally published in the Santa Fe New Mexican
Life Circle Day Center, The Memory Care Alliance and The Alzheimer’s Association are all members of the SFEN