Most of Margo Ryan’s visits with her husband, Ron, amount to simply being in his presence.

With his body ravaged by Lewy body dementia, a disease that combines the worst symptoms of Parkinson’s and Alzheimer’s, Ron has lost nearly all of his movement, most of his speech and much of his understanding of the world around him.

As he enters the final phase of hospice care, Margo usually stands sentry next to his bed, acting as his advocate and his connection to the outside world. Most days she guides him through their regular circuit: first to the dining hall, then to a planned activity, and back to his room where she’ll read for her weekly Bible study or work on her quilting as she sits, a sort of vigil, waiting for Ron to wake up, turn his head and see her there — right by his side.

Just like she has been for the past 26 years; the happiest 26 years of her life, she adds quickly.

But angst over the growing coronavirus pandemic and its deadly effects on the elderly population has threatened their typical pas-de-deux. Like other nursing homes in the state, Ron’s facility, Sunny View Care Center in Ankeny, went on “lockdown” March 10, a half-measure of quarantine that means staff come and go, but spouses and primary caregivers are barred from entry.

Given all Margo does for Ron, everything from cutting toenails and cleaning ears to making sure he eats without getting distracted, she feels he needs her now more than ever. And with her husband unable to comprehend the extraordinary reason why their routine has changed, she knows he will be lonely, confused and anxious — as will many other patients with brain or memory issues in now-closed homes.

“He is just going to draw into himself,” Margo said. “He’ll be so depressed.”

“He’s going to …,” her voice catches as she wipes a tear away, “… wonder why I stopped seeing him. Do I not love him? Where am I?”

Margo, 63, is part of a growing group of spouses or primary caregivers struggling with this new reality — and making hard choices. Considering the nightmare unfolding at the Life Care Center in Kirkland, Washington, where more than 20 people died after a coronavirus outbreak there, spouses and loved ones understand that nursing homes are trying to head off disaster. But they decry the lack of warning and the dearth of information.

The primary caregivers I spoke with said they were given just hours, if any time at all, to get to their loved one’s facility for one last visit. Others said there didn’t seem to be plans in place for emotional well-being during this time when dealing with physical needs is sure to be difficult enough. And most were told these lockdowns would be in place for the foreseeable future, making them even more concerned about their loved ones' health and safety.

Margo first heard of Sunny View’s new visitor arrangement from the wife of Ron’s roommate, who called to say Margo needed to get out there stat if she wanted to visit before the doors locked. So Margo grabbed up Charlie, the couple’s dog, and raced for Ankeny.

She got there just in time, asking a nurse to please bring Ron’s dinner into his room so Charlie could have a final cuddle. There, in this maybe-last peaceful moment, they were both so happy, Margo tells me.

Margo waited as Ron, 72, dozed off, still standing sentry, but this time she wasn’t thinking about Bible study or the newest quilting pattern. This time she wondered how she would reconcile in sickness and in health with the global pandemic that had just landed on their doorstep.

“He'll smile at you,” Margo said of Ron. “His eyes are bright, and you know that even though you're trying to explain to him what's going on, it doesn’t register.”

A seamless love. A dark diagnosis.

Margo met Ron’s big-hearted bird dog, Duke, before she met Ron.

Working as a nurse and renting a place in Ron’s hometown of Hansel, Iowa, population 80, Margo was walking her rescued greyhound, Buddy, when the two canines got to sniffing — and the two owners got to talking. Soon these “chance” meetings on dog walks became their norm.

“I always joked that when I'd walk out of town, he wouldn't be outside,” Margo said. “But when I'd walk back into town with my dog, he miraculously would be outside. Years and years later he told me, ‘You know, I would watch for you after work.’”

Their love bloomed when both were north of 40 and once divorced. From the very beginning, their relationship was seamless, almost like where one ended, the other began.

Forged by Midwestern hard work ethics, neighborliness and humility, Ron is a gentleman, Margo says. A carpenter and Vietnam veteran, Ron often would spend nights and weekends lending a hand fixing this and that for older women in town — no matter how tired his bones were. He spent most mornings downing coffee with a group of guys as they tried their hand at “solving all the world’s problems before lunch,” Margo told me.

Whip-smart, he’s a man of few words, Margo said, adding that, “When he spoke, you knew it was from the heart or he’d given it great thought.”

About six years ago, Ron started forgetting small things, and his slight tremors grew more pronounced. After a full year of tests and dozens of appointments, the couple finally got the diagnosis they were dreading: Lewy body, a fast-progressing, incurable disorder.

“He has accepted it with grace,” Margo said. “He never complains.”

As Ron’s condition worsened, the couple packed up their home — where Ron had lived for 45 years — and came to the capital city to be close to doctors and a new promotion for Margo. They readjusted, exercising by walking around the zoo and passing time on their balcony watching golfers tee off from Waveland’s 14th hole. She put Ron in adult day care, where he went right on drinking coffee and solving the world’s problems, just with a new group of guys.

But having Lewy body is like being on a roller coaster without breaks. Drastic drops come fast, and cautious climbs never quite get back up to the height of the previous peak.

In the fall, despite Margo retiring to focus more on her husband’s health, the time had come for Ron to go into a home. He was getting more confused and falling regularly. Margo stressed about leaving him alone for even a quick grocery store run.

“It was a hard decision,” she said. “Oh, my, I cried. I cried and cried and cried. And he was so depressed.”

'Our freedom had been taken away'

Margo knows she is not the only one who plays a primary caretaker role for a loved one in a home. All across the country, there are husbands who come to care centers early to get spouses ready for the day and stay through lunch, or wives who come in the afternoon to be there for supper and help with bedtime — not to mention the children who make regular stops to see their parents.

As care centers took the drastic step of banning visitors last week, family members questioned how institutions would take care of details they normally handle and how they would ensure emotional health, too.

► More:The latest on coronavirus in Iowa

Quality of life really means something when you don’t have much life left to live, said Carol Baxter, whose husband was Ron’s roommate. Baxter checked out her husband, also named Ron, as soon as she learned about the lockdown last week.

“I just felt like our freedom had been taken away,” she said.

“We’ve been married 27 years,” Baxter continued. “He’s my sweetheart and I am his. We just have to have that connection, and it’s not healthy not to have that.”

Baxter has watched Ron Ryan deteriorate in the months that she’s visited Sunny View, but said every time Margo and Charlie come to visit, he lights up. One week this winter, Margo stayed home with the flu, and Baxter said Ron was visibly depressed.

“He slept all the time and he didn’t want to eat,” she said. “It was hard for him to make eye contact. So I know how important it is for him to see Margo. I’ve seen what it's like when he doesn’t.”

When Baxter left on March 10, she got down to Ron Ryan’s level and told him as clearly as she could what was happening.

“I said, ‘I’m not going to be able to be here because there’s a bad virus and they don’t want the residents to get sick,’” Baxter said. “I could see he was trying to understand, but it didn’t sink in. He smiled, and I just told him that I was really going to miss him.”

"He can't speak for himself," Baxter continued. "He needs Margo, absolutely. She is his lifeline."

Early confusion, consternation over lockdowns

As the confirmed cases of coronavirus continued to grow across the state, confusion seemed to reign inside some care facilities. Despite watching loved ones' reactions to the outbreak in Washington state and knowing the high mortality rate in elderly patients with COVID-19, state agencies made little specific information publicly available. Though, in fairness, the situation was evolving quickly.

On March 4, four days before the first confirmed cases of the virus in Iowa, the Iowa Department of Public Health held a 90-minute webinar focused on preparatory measures for nursing homes, including scheduling workers in anticipation of short staffing, reiterating proper hygiene and ensuring homes were in communication with local ambulance services about how to transfer a patient to the hospital.

The department’s next update focusing on long-term care residences came a week later and said facilities should “align their practices with recent guidance from the Centers for Medicare and Medicaid Services (CMS),” the federal group that licenses such locales.

At the time, those guidances did not order any organization to ban visitors altogether. Instead, they said centers “may restrict” guests who have traveled to known hot spots or are suffering from a respiratory illness.

The Iowa Health Care Association, a nonprofit advocacy group for nursing facilities, issued a dovetailing statement echoing those federal guidelines, making clear that the guidance didn’t call for a complete ban on visitors at the time. The statement did, however, encourage nonessential visitors to consider other ways — phone calls or Skype chats — to stay in touch with their loved ones.

The Department of Public Health did not respond to requests for further clarification on its instructions and has not posted another directive for long-term care facilities since.

The Department of Inspections and Appeals told me the facilities it “oversees” through its contract with the CMS received that group’s guidance. Locations categorized as assisted living or residential care facilities, which are not certified by CMS, did not receive that guidance.

When asked to clarify what information the department sent to facilities, a spokesperson said the agency has had "multiple lines of communication," including recurring conference calls and mass emails. She did not detail dates or times for these connections, but it would be 12 days between the department's public update on March 6 and its next one, dated March 18.

On Friday, after sports seasons ended and travel bans were implemented, CMS issued a new nationwide policy that called on a full ban of all visitors and nonessential health care workers except for “end-of-life situations.” But the guidance goes on to say decisions involving possibly declining residents should be made on “a case-by-case basis.”

Even as the new restrictions went into place, CMS urged residences to inform loved ones of changing situations “through multiple means,” including “through signage at entrances/exits, letters, emails, phone calls, and recorded messages for receiving calls.”

Noting all involved have the same goal of protecting the country’s elderly residents, Brent Willett, president and CEO of the Iowa Health Care Association, said in a statement that he understands family members’ concerns.

“We have to take every step possible to keep this virus out of long-term care facilities,” he said. “That’s best accomplished by increasing infection control protocols and decreasing the number of people entering nursing homes or assisted living facilities to limit potential exposure.”

Living and dying in quarantine

The amputation of Margo’s other half has been tragic, to put it mildly. She worried whether the staff would notice that when Ron clenches his jaw, he needs something. Or would ask the right questions to see if he’s thirsty or hungry — he’d never come right out and say so for fear of being a burden or a bother, she said.

Or if anyone would be there when he wakes up and turns his head.

After “raising holy hell,” Margo got a chance to see Ron in his room Friday. Asking him how he was doing, he paused before saying: “I don’t know what I am doing. I don’t know what’s what. Nothing.”

The care center, which Margo doesn’t usually have qualms with, offered to help connect the couple via Skype, but Ron’s dementia means he gets confused and frustrated when he talks on the phone. That may work for some, Margo says, but not for her husband. She has to be there.

“Ron doesn’t want to live without me,” she said, “and he certainly doesn’t want to die without me.”

And Margo doesn’t know how much longer he has. He’s weaker. He’s eating less. He’s declining physically. Recently, she worried she’d be restricted more.

After visiting throughout the weekend and the early part of the week, Margo decided to take Ron home. She called her children Tuesday to help get him up the 15 steps to the couple’s condo. Now that he’s in, Margo knows he won’t be leaving again.

“I do not want my husband to be alone, confused and scared at the end of his life,” she said. “And the isolation was contributing to his confusion. He was just so lonely.”

While their pas-de-deux has changed, Margo is still sitting sentry. She works on her quilting as Ron watches the golfers or naps while Charlie sleeps on his lap. And when he turns his head, she's there.

Pandemic or no pandemic, she made a promise 26 years ago, she said. A promise to be by his side in sickness and in health.

And it’s a promise she intends to keep.

Courtney Crowder, the Register's Iowa Columnist, traverses the state's 99 counties telling Iowans' stories. If you are struggling with coronavirus/COVID-19, I want to hear from you. Please reach out at ccrowder@dmreg.com or 515-284-8360. Follow her on Twitter @courtneycare.

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