By Blaise Mesa and India Yarborough
About two years ago, Beverly Ketter’s husband was diagnosed with dementia.
Still, the couple led an active life, Ketter said. Every Wednesday night, they would play cards with friends. Every Saturday, they would go dancing. And until this year, Ketter was able to take care of her husband by herself.
But in the early months of 2020, things began to change.
Ketter said the “intelligent, smart” and “gentle” man she had been married to for 68 years started to show signs of aggression. He wasn’t sleeping well. And Ketter soon realized she needed help.
Her husband was approved for in-home hospice care, and nurses started coming in regularly to check on him.
Then, the coronavirus pandemic hit.
Ketter and her husband began quarantining at home around the time stay-at-home orders were handed down to Shawnee County residents in late March. Hospice nurses still visited them about once a week, but other than that, Ketter and her husband were alone.
“We didn’t go anywhere,” she said. “He would keep saying, ‘Where is everybody? How come nobody comes to see us?’”
That lack of human contact started to take a toll.
“He got so bad during March and April,” Ketter said. “I really think the isolation caused him to get bad so fast.”
After an incident in early July, Ketter knew her husband couldn’t live at home anymore. She decided to place him in a memory care facility, choosing Oakley Place in Topeka.
Ketter said she was able to visit him for about 45 minutes each day because he qualified for hospice — though there was about a month’s time during parts of August and September when COVID-19 cases had surfaced at Oakley Place, causing the facility to restrict visitation even for hospice residents.
Ketter said she was grateful for those regular visits. She recognized many people haven’t had that luxury, as a number of nursing homes in the area continue to restrict visitation.
“I just can’t imagine what it’s like,” Ketter said. “I think these people are deteriorating by not having social contact.”
Her husband died Thursday, less than three months after leaving his home.
Isolation’s impact
Visitation at nursing homes in Kansas, and across the country, has been restricted during the ongoing pandemic, as facilities attempt to limit the spread of a virus that has been shown to result in more serious health conditions for those in high-risk categories, including the elderly. Shawnee County’s health officer announced late last month that visitations may resume under certain conditions, but allowing visitations and restricting them both come with a cost.
In early September, the Office of the Kansas Long-term Care Ombudsman surveyed family members of residents living in long-term care facilities. The survey found that residents felt like they were in prison, expressed no interest in living and actually had their conditions worsen when visitations weren’t allowed.
“We know that they are dying in there, the isolation is literally killing them,” wrote one anonymous survey respondent.
“My father has aged tremendously during this lockdown,” another said. “He also is not as cognitive. Says daily he feels like a prisoner.”
Only 32% of survey respondents said their loved ones in a nursing home or assisted-living facility could answer the phone by themselves. The survey also indicated even outdoor visitation has been limited, as the majority of respondents said they weren’t allowed to visit loved ones outside for more than 30 minutes at a time.
″(My mom) is depressed, on medication and dying from loneliness,” a respondent wrote. “My God please help.”
According to Carol Adams, a licensed clinical psychologist at Stormont Vail Behavioral Health Center, social isolation and loneliness can exacerbate health issues.
“The primary impact of social isolation on the elderly, and not only the elderly, is increased depression and anxiety,” Adams said.
She added that the uncertainty surrounding the pandemic has caused many people — in and outside of nursing homes — to fear interacting with others because of the possibility of contracting COVID-19. That fear can lead to heightened stress, Adams said.
“Stress can also do things like increase blood pressure and increase blood sugars,” she said, pointing to the fact that social isolation doesn’t just take a toll on a person’s mental health.
“We know based on research that mental health conditions do have an impact on physical wellbeing,” Adams said. “Prolonged stress reduces our immune system and our response to physical conditions. ... With stress people can have headaches. They may not be eating as well as they used to. And we’ve also seen where people don’t have as much access to nutritional food because of COVID — and medicines. So it really has impacted particularly our elderly in a very intense fashion.”
Ketter, who placed her late husband in a care facility over the summer, speculated social isolation may have caused his dementia to deteriorate faster than expected. Adams said that’s certainly possible.
“I do believe that can happen,” Adams said. “Social isolation, lack of stimulation to the brain, depression, anxiety — all of those things can exacerbate cognitive difficulty in older folks.”
In her current practice, Adams works with adults of all ages, but she spent nearly 20 years in nursing homes doing consultations and providing mental health treatment for the elderly. Given that experience, Adams said it is crucial for long-term care facilities to provide residents the ability to participate in telehealth. She said those facilities must also find creative ways to meet the social and emotional needs of their isolated seniors.
“I think providing more education to residents, providing personal protective equipment and continuing to have group activities — very small groups and socially distancing people but giving people the opportunity to get out and see their peers in facilities so that they’re not feeling so socially isolated,” Adams said.
According to Carol George, vice president of operations at Aldersgate Village in Topeka, Aldersgate has already begun to get creative with its offerings.
George said Aldersgate Village personnel have created local television channels for residents to view and have purchased smartphones for the facility’s nurses so that residents can make video calls. The special TV channels, which were set up by partnering with Cox Communications, feature shows about exercising, solo activities residents can complete and daily devotionals from a pastor, George said.
Reunions on the horizon
Relief in the form of limited visitations may be on the horizon for residents of long-term care facilities and their families.
Shawnee County health officer Gianfranco Pezzino announced Sept. 17 that visitation may resume if those facilities meet requirements laid out by the Centers for Medicare & Medicaid Services. For indoor visitations to resume, facilities must have no new COVID-19 cases for 14 consecutive days. They must also limit the number of visitors at a time, regularly disinfect facilities, practice proper hygiene, have staff wear personal protective equipment and have visitors wear masks.
Restrictions are looser on outdoor visitation, and CMS recommends “all visits should be held outdoors whenever (practical).” CMS recommends limiting the number of visitors for outdoor visits, but it allows nursing homes to determine that cap.
To resume visitations, counties must also have a positivity rate lower than 10%, otherwise only compassionate care visits are allowed. Compassionate care visits may include end-of-life situations, a situation in which a resident is grieving the loss of a family member or friend, or when a resident is struggling to adjust to their new environment in a care facility.
According to George, Aldersgate Village residents were ecstatic to hear some visitation was resuming.
“I wish you could experience that,” she said. “That look in somebody’s eye when they haven’t seen their son or daughter for so long — it just makes you cry.”
Lester Israel, 85, lives at Oak Creek Senior Living in Topeka. He said a lot of the people at his assisted-living facility need to see their family. But while Israel feels safe at Oak Creek, he knows that just one COVID-19 case “could wipe out the whole facility.”
His remark points to the balancing act many long-term care facilities are performing — do they allow visits and risk cases, or do they continue to restrict visits and risk mental health?
Scott Brunner, deputy secretary of hospitals and facilities at the Kansas Department of Aging and Disability Services, said that when balancing those considerations, the scale should lean toward visitation. He said telecommunication visits and those in which a family member must communicate with their loved one from outside a window just aren’t the same as in-person interaction.
Visitation may come with a cost
The Kansas Department of Health and Environment has reported that nearly a third of the state’s coronavirus clusters are linked to long-term care facilities. But while those care facilities account for about a third of the cluster sites, they are associated with more than 85% of the state’s cluster-related deaths.
Aldersgate Village, which Medicare.gov has deemed a four-star facility, has had, as of early October, the most confirmed COVID-19 cases and deaths of any nursing home in Topeka. The facility has had 73 confirmed cases, 18 suspected cases and 14 deaths linked to COVID-19, according to the Centers for Medicare & Medicaid Services’ nursing home database.
A Sept. 25 memo to residents at Aldersgate Village announced outdoor visitation had resumed, but a week later on Oct. 2, the facility announced a staff member had tested positive. Still, Aldersgate is scheduling outdoor visitation.
Brian Lee, executive director of Families for Better Care, said he fears there will be a spike of coronavirus cases in long-term care facilities if these homes aren’t better supported when visitation is allowed. Lee said nursing homes and assisted-living facilities don’t have enough molecular, rapid testing at the door to get quick results for everyone entering a facility.
According to George, though, that level of testing isn’t feasible at Aldersgate, and she said the facility doesn’t have staff that are qualified to even operate a molecular test. She said her facility has plenty of antigen tests, but Lee said those tests won’t keep the virus out.
“This virus targets (the elderly) like an Exocet missile,” Lee said. “We have really been playing Rusian Roulette ... with the nursing homes and assisted-living facilities when it comes to this pandemic.”
Lee isn’t against visitation, but he said there needs to be changes to save lives.
Mitzi McFatrich, executive director of Kansas Advocates for Better Care, said banning visitation is problematic because residents who are unable to see their loved ones have a lower quality of life.
Still, McFatrich shares Lee’s concerns. She indicated nursing homes aren’t much better prepared for the virus now than they were when the pandemic began, and she doesn’t think there are preventative measures in place to stop the virus from spreading through nursing homes, as it did in a number of facilities nationwide at the outset of the pandemic.
“Do we have anything in place that is going to prevent the spread of COVID-19? Best I can tell, we do not,” McFatrich said. “There is not a vaccine, not a treatment.”
McFatrich said wearing masks, testing and social distancing are the best ways to prevent the spread of the coronavirus, but there isn’t a uniform system in place, she said, for long-term care facilities to track how much personal protective equipment they have on hand or to determine whether they are adequately staffed.
According to George, Aldersgate Village has been well supported around the clock by state and local government, and she said Aldersgate was even able to get additional PPE from Shawnee County on a Sunday night.
Still, allowing visitation is tricky, she said, as Aldersgate staff attempt to balance “the good of the patient versus the good of the family.”
Lee said the level of infection in facilities will depend on how prepared they are when visitors are welcome again.
He anticipates some facilities may not be ready for visitation. Still, he said, residents need to see their loved ones.
“Families are desperate to get in there,” Lee said.
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