Tough Choices: Removing Parents From Nursing Homes During Pandemic Families Grapple With COVID-19 Risks, Worsening Isolation

Sandy Isham didn’t remove her mother from a nursing home because she feared COVID-19. Dolly, a 92-year-old with hip and back problems, already has a very low quality of life.

Isham’s greater concern was the downhill slide her mother took from the social isolation that ensued following the outbreak.

Isham was slightly concerned about the care her mother was receiving prior to the pandemic. Since the outbreak, though, Dolly developed bed sores and Isham couldn’t see if they were being cared for or if others were developing.

Isham couldn’t tell if Dolly’s pain was being managed because dementia kept her from remembering if she hurt while her daughter wasn’t there. Dementia also caused distraction and confusion during evening visits when Dolly saw her own reflection in the dark window where they sat and talked through a three-inch gap.

“In more lucid moments, she would tear up and say she felt trapped,” Isham said. “Ultimately, I had had enough and couldn’t take her sadness… I have seen disturbing declines in her in the past three months that I never saw during the three years she was living with me.”

So Isham pulled Dolly from the nursing home and moved her back into her home. She’s planning to look for a new facility when “things clear up.” 

As COVID-19 rages across the country, the pandemic has taken a toll on the physical health and emotional well-being of people living in long-term care facilities. With the spate of outbreaks in nursing homes, families are making tough decisions about whether to leave loved ones in, take them out, delay the process, or avoid them altogether. 

Heavy toll

COVID-19 has hit nursing homes particularly hard. In Missouri, approximately 400 of the 1,100 total coronavirus deaths have been in long-term and residential facilities. In Kansas, approximately 90 of its 300 deaths have occurred there. In Minnesota, nursing homes and residential facilities accounted for 81% of the state’s COVID-19 deaths.

Interactive COVID-19 Case Mapper

About a dozen facilities in the Kansas City area have reported outbreaks, one of which is The Groves in Independence, Missouri. After someone who was asymptomatic brought COVID-19 into the facility, they reported 34 cases among 400 staff members and 300 residents. 

Dee Shaffer, the facility’s CEO, said a few more people have tested positive since first reporting the numbers, but they have managed to keep things contained. To do so, they perform multiple weekly tests on all staff and patients and have isolation units: one for the general population, another for new admissions or readmissions, and a space for people with dementia, who are more challenging to isolate.

“Most health care providers serving this fragile population do amazing work and are held to incredibly high standards by the number of federal, state and local regulations we are required to maintain compliance with,” Shaffer said. “We are responsible not only for their clinical condition, but also their psychosocial condition, and we take those responsibilities very seriously.”

Emotional health

One thing that makes COVID-19 so difficult to manage is its asymptomatic spread. Regardless of precautions taken, it can be nearly impossible to control, which is why so many facilities have created strict isolation policies, said Nikki Strong, executive director of Missouri Health Care Association.

“Having to keep our residents away from their family and loved ones has been devastating not only for them, but also for staff,” Strong said. “They see how this is impacting everyone, and it is heartbreaking.”

Gina Gawlick, a resident of south Overland Park, has been able to see her mother every day since the pandemic hit. The staff at her mother’s facility allows her to provide daily breathing treatments the 82-year-old needs to manage chronic obstructive pulmonary disease (COPD).

The things her mother used to enjoy – taking walks in the halls, chatting with other residents at lunch – were nixed when Covid-19 hit. A parade of children walks by on Fridays and waves to residents. Sometimes her mother forgets she can’t go out and walks the halls, but there’s no one to talk to during her breakouts. And food brought to the rooms is not as hot or fresh as from the dining room where she eats surrounded by friends. Gawlick said her mother has lost weight and is visibly depressed. 

“She’s so lonely…and her memory went downhill dramatically due to lack of stimulation,” Gawlick said. “Everyone is doing their best, but it’s not the same. I don’t know what the next few months will bring, but I may have to move her if things don’t get better.”

Another set of eyes

Part of what spurred Isham to bring her mother home was the inability to have direct knowledge of how her mother was being treated. That also has been difficult for Stephnee Leathers, whose father is a resident at an Overland Park facility. 

Though her sister sees her father regularly, Leathers lives in Northern California. She used to visit every other month but has not seen him since January because of the pandemic.

She and her sister have been lucky, she said, to be able to afford extra help for their 76-year-old father who has Parkinson’s. 

“Through this situation, what I realize is that the more people we have involved in his care, the better,” she said. “But it’s tough not to be there with him.”

She is thankful his facility hasn’t been affected by the coronavirus. But the house phone she talks to him on isn’t private and his Parkinson’s makes it a challenge to communicate verbally. Her father, who likes to go for walks and drives, can no longer operate a vehicle. They are waiting to see if one of his caregivers can take him on a ride soon. 

“He feels like he’s locked in a jail if he can’t get out,” she said. “The frustrating thing is, during COVID, I can’t confirm that they are taking care of him and I know his emotional needs aren’t being met.”

Leathers is relatively lucky that her father has continued to receive extra care during the pandemic. Andrea Leavitt, a geriatric case manager and co-founder of Agewise Advocacy and Consulting, hasn’t been able to see hardly any of her clients since March. 

“We can’t do our own assessments or have input on their care because we’re out the door,” she said. “It seems like the priority – which is to increase their quality of life – has been forgotten. It’s more of a clinical environment because people are getting their oxygen taken regularly and their temperatures, but staff aren’t lingering to have conversations with them. They give them their meds and are out.” 

Leavitt has heard of a lot of families removing people on hospice care. Hospice visits were cut by the Centers for Medicare and Medicaid Services from three weekly to once every 21 days. Everyone seems to be making the best of a difficult situation, Leavitt said, but it baffles her that people can’t visit loved ones outside, with masks, six feet apart. 

Challenging environment

Leathers believes the homes are truly making the best of an unprecedented situation. But the pandemic has exacerbated challenges already facing the long-term care industry. Preexisting issues with inadequate staffing, financial pressure and a lack of preparedness have been laid bare. 

Staffing shortages have long been a challenge in long-term care facilities. Low wages, long hours and hard work keep turnover high. In fact, about 75% of facilities in the country did not have adequate staffing before the pandemic, according to Lori Smetanka, executive director of the Washington, D.C.-based advocacy group the National Consumer Voice for Quality Long-Term Care.

Visiting families used to provide supportive services like feeding and grooming. With most facilities on lockdown, those tasks are all left to staff. Many organizations are testing frequently and have split homes into quarantine sections. Food is being delivered to residents instead of eaten in the cafeterias. Workers are also spending more time helping maintain connections between residents and families.

Facilities that have confirmed cases of COVID-19 immediately see a dip in staffing, Strong said. Employees who test positive cannot return to work until cleared and others call in sick out of fear of contracting the virus.

Strong said the “chronic underfunding” of Medicaid, coupled with increased costs related to the pandemic, will require facilities to receive financial assistance to keep up.

Care facilities are being crushed in a vice of soaring costs and sinking revenues due to the pandemic. Battling COVID-19, Strong said, has caused supply costs to increase by more than 100% and labor costs to rise 18%. Meanwhile, occupancy rates are down 10%, causing revenue losses of more than 20%, she said. 

Regardless of the recent challenges, homes have struggled with some longstanding issues that, if they had been addressed, may have enabled them to stave off some of the pandemic’s burden.

Smetanka said facilities are required to have emergency plans in place, but many didn’t or weren’t adequate to manage this pandemic. 

Infection control has also been a persistent issue. In May, the U.S. Government Accountability Office (GAO) found that 82% of the nation’s nursing homes had an infection prevention and control deficiency cited in one or more years from 2013 through 2017. Deficiencies can include things like improper hand hygiene or failure to implement preventive measures during an infection like isolating during flu season.

Most of the citations were considered minor and only 1% of organizations received any kind of enforcement action. But the GAO did find that more than half of those cited had deficiencies in multiple consecutive years, which the report called an “indicator of persistent problems at these nursing homes.” 

Tough choices

Mitzi McFatrich, executive director of Kansas Advocates for Better Care, has talked to numerous families struggling with whether to bring a family member home. It’s not a simple choice for anyone. Some people work long hours and can’t provide the care a loved one needs. Still others are “essential workers” with a lot of public exposure. 

Family members have told McFatrich their loved ones have lost weight, have increased anxiety and depression, suffered falls and experience increasing cognitive challenges since the pandemic hit. 

Minds Matter LLC helps people with a brain injury live independently. For the past few months, they have received a huge spike in calls from people asking to help them get people out of facilities.

Janet Williams, founder and president of Minds Matter, said she received a call from UnitedHealthcare, which she works with to provide home services, to help get 30 people out of facilities. 

“There are a lot more people wanting out and people redoubling their efforts to stay home,” she said. “When we know of a need, we have been able to figure it out. When you do this work, you become a problem solver extraordinaire.”

Brenda Gregg, a dementia care specialist with the Alzheimer’s Association Heart of America Chapter, said she has been working with families as well.

“We are trying to figure out what types of supports to provide and build into the home setting to delay the transition to facilities even longer now,” she said. “We are finding formal and informal supports for in-home care.”

When she talks with families, she goes over a handful of important aspects of bringing a family member home. First, the circumstances that led to the transition into a facility. If they were wandering or incontinent or aggressive, are those issues still there? Second, if caregivers will have to help in the home, will that increase the family member’s risk of COVID-19? Third, if they want to transition to another facility, they need to ensure the new one is taking new residents. And if so, there may be a two-week quarantine when they move.

“It doesn’t always work the way we want, unfortunately,” she said. 

Also, the general rule for people with memory loss is to move them as few times as possible. They take longer to transition and get settled than others do. Moving in and out of facilities or homes can be disturbing. 

There is so much guilt, concern, regret and worry among families with loved ones currently in facilities, Gregg said they recently created a virtual support group just for people in that position. 

“They (residents) may be doing OK, we are just upset because we can’t see them,” she said. “Family members may need to reach out to different supports to make them feel better about the situation.” 

Smetanka said people really need to consider all the needs of any individual and explore different care options before making any choices about leaving a facility. Groups like AARP are providing information to caregivers and state ombudsmen can discuss available options. 

COVID-19 has affected the way the entire industry does business and the way families look at long-term care. Strong expects the new normal to be different even when things reopen. Testing, personal protective gear and social distancing will continue to be at facilities until a vaccine is created, she said.

“We are in a place now, as a society, to consider how we provide long-term care treatment – how we pay for it and what options are available,” Smetanka said. “We need to look at how we’ll move forward and how we might need to change some of those systems.” 

Tammy Worth is a freelance journalist based in Blue Springs, Missouri.