"Life's about more than just breathing"

September 2, 2020
Sheila Harris
Imminent death, whether it’s our own or that of a loved one, is not something most of us want to think about, let alone talk about. But Jill Strother, of Eagle Rock, is just being realistic when she states that her 92-year-old mother and other residents of care facilities are going to die anyway, whether they get COVID-19 or not.
“Mom is going to die soon enough,” Strother said, “and I know her well enough to know she wants to live until she dies. For mom, living means seeing her kids and grandkids. We’re the people who make her feel alive. Living does not mean being cooped up in her room without company.”
With her mother and other residents of Missouri’s long-term care facilities in mind, Strother is driving a local and state effort to generate enough signatures on a petition to catch the attention of Missouri Governor Mike Parson, as well as the Director of Missouri Department of Health and Senior Services, Dr. Randall Williams. The petition is written and promoted by Missouri Caregivers for Compromise, a Facebook group advocating for the rights of residents of long-term care facilities, people who, according to the group, were never asked if they wanted to be socially isolated under the premise of protecting them from COVID-19.
The petition’s request of the governor is simple: That one family member or friend of each resident be designated as an “essential caregiver,” and have the same rights to entry of the facility as a staff member.
“I can put on a mask and practice the same safety protocol as others who are in the building,” Strother said, “but I would be there to see and take care of the needs of only one person: my mother.”
Strother’s mother, Fredalene Gowen, struggles with dementia and has been a resident at Oak Pointe Assisted Living Center in Monett for the past 18 months. According to Strother, her mother’s condition has deteriorated rapidly since March, when the facility was essentially placed on lockdown because of COVID-19 concerns, with no inside visitors allowed.
“My mother is very isolated now,” Strother said. “The only people she sees are the staff members who come to her room to check on her and deliver her meals. Residents aren’t even allowed to go to the dining room to eat anymore, so they don’t get social interaction at meal time either.”
While Strother understands the need for precautions in the face of COVID-19, she strongly believes that isolation is killing more residents in these facilities than COVID-19 is.
“There’s a direct link between social isolation and deteriorating mental health,” Strother said, “especially for people with dementia. Interacting with family members can keep them from mentally slipping away altogether, which I see my mother doing right before my eyes.”
Strother and Gowen’s other children, Scott Carney, of Monett, Craig Carney, of Rogers, Arkansas, and Jane Ann Gowen, of Kansas City, are allowed window visits and outside visits with their mother – when they can convince her to come to the window or come outside.
“Some days I can’t even get her to open the blinds when I knock on the window,” Strother said. “She’s off in her own world and either doesn’t hear me, or doesn’t want to be bothered.
“Likewise with outdoor visits,” Strother added. “With the weather as hot as it’s been all summer, a lot of times Mother doesn’t want to come outside. She tells me, ‘You come in here.’ She doesn’t understand that I’m not allowed to. And even when she does come outside to visit, we’re not allowed to get within ten feet of her.”
According to Strother, residents of Oak Pointe are allowed two visitors at a time, providing that all parties are healthy. When visiting, the 10-foot distancing policy means no touching is allowed. No hugs, no hand-holding, no simple physical gestures that let residents know they matter.
To complicate matters further, said Strother, her mother has difficulty hearing.
“Because she doesn’t hear well, even when we can convince her to come outside,” said Strother, “with the distancing rule, my brothers and I have to shout at her so she can hear us, then we’re told not to yell.”
As evidence of her mother’s deteriorating mental condition, Strother points out that there have been times her mother hasn’t recognized her (Strother’s) brothers when they showed up for outdoor visits.
Strother doesn’t call the isolation her mother is experiencing, “living.”
“She’s dying right in front of us, but we’re not allowed to be close. She’s dying without us, without family to be with her,” she said. “Vendors and employees are allowed to go inside. I could take the same precautions they do and visit with her safely. I just want to be allowed to do that. I’d wear a mask and follow all the rules. I just want to get inside, get close to her.”
Jill Strother is one of a growing group of concerned citizens across the United States who are realizing the negative effect of isolation on their loved ones in care facilities since restrictions due to COVID-19 have been put in place.
“People in hospitals and residential care centers are dying alone, without family members to be with them,” she said. “We’re told that it’s in the name of safety, but whose safety? These are the people who took care of us when we were babies and made sure we grew up safely, and now they’re being forced to die alone.”
Strother feels strongly that many such deaths in nursing homes and assisted living centers are, in part, a result of the enforced isolation. Residential care facilities label such deaths as a “failure to thrive,” a catch-all phrase that angers Strother.
“How can a person thrive without social interaction?” She asked. “We’re wired up for community. When we don’t get it, we become anxious, depressed and give up hope.”
Provision Living, based in St. Louis, owns Oak Pointe in Monett, plus 17 other residential care centers in the United States. Cindy Sorgea, Marketing Project Manager for Provision Living, understands Strother’s feelings. However, she’s also proud of the guidelines Oak Pointe has in place to protect their residents and employees, guidelines which only allow essential visitors into their community, criteria that family members of residents do not meet.
“Those guidelines – suggested by the Missouri Department of Health and Senior Services – have served us well,” she said. “Up to date, we have not had even one positive case of COVID-19 in our Monett facility.”
According to Missouri Department of Health and Senior Services statistics, while by far the largest number of new cases are appearing in the “20 -30” age range, the largest number of deaths and the largest percentage of deaths per cases are appearing in the “70 and above” age group, a cause for legitimate concern for those who operate congregate care centers.
“We do allow what we call ‘compassion visits’ by family members to residents of Oak Pointe,” Sorgea said.
According to Sorgea, compassion visits are end-of-life visits, when it’s determined that a resident is nearing the point of death.
“We also give family members the option of removing residents from Oak Pointe to care for them at home,” Sorgea added, an option which is not possible for Strother, who has been dealing with health problems of her own.
It was announced August 27 that an increase of $84 million in COVID-19 relief funding will go to 520 nursing facilities in Missouri, a bump designed to help facilities expand testing capabilities, increase staffing and purchase personal protective equipment. While Missouri’s U.S. Senator Roy Blunt hopes the added funding will help save lives, for Jill Strother, the question remains, “Is it really saving my mother’s life to deprive her of social interaction, to deprive her of visits with her family?”
Strother doesn’t think so.
She is encouraging Missouri residents to sign the online petition being circulated by Missouri Caregivers for Compromise. The petition, in essence, asks that one family member or friend, per resident, be designated as an essential caregiver for that resident. The designated family caregiver could be screened, tested, wear PPE and enter the facility, just as staff members do, and could help fill the resident’s need for emotional and social interaction.
“Other states have already implemented such policies,” Strother said. “Missouri can, too.”
“I’m not going to be quiet about this,” she added. “People have always died; they’re always going to die. But they shouldn’t have to die alone. I’m urging people to contact their state representatives and senators, and, above all, sign the Missouri Caregivers for Compromise petition at the link below. We need to make our voices heard on behalf of those who can’t speak for themselves.”
Find the Missouri Caregivers for Compromise petition (titled “Essential Family Caregivers”) at:
www.change.org/o/missouri_caregivers_for_compromise_-_because_isolation_kills_too
Sheila Harris
Imminent death, whether it’s our own or that of a loved one, is not something most of us want to think about, let alone talk about. But Jill Strother, of Eagle Rock, is just being realistic when she states that her 92-year-old mother and other residents of care facilities are going to die anyway, whether they get COVID-19 or not.
“Mom is going to die soon enough,” Strother said, “and I know her well enough to know she wants to live until she dies. For mom, living means seeing her kids and grandkids. We’re the people who make her feel alive. Living does not mean being cooped up in her room without company.”
With her mother and other residents of Missouri’s long-term care facilities in mind, Strother is driving a local and state effort to generate enough signatures on a petition to catch the attention of Missouri Governor Mike Parson, as well as the Director of Missouri Department of Health and Senior Services, Dr. Randall Williams. The petition is written and promoted by Missouri Caregivers for Compromise, a Facebook group advocating for the rights of residents of long-term care facilities, people who, according to the group, were never asked if they wanted to be socially isolated under the premise of protecting them from COVID-19.
The petition’s request of the governor is simple: That one family member or friend of each resident be designated as an “essential caregiver,” and have the same rights to entry of the facility as a staff member.
“I can put on a mask and practice the same safety protocol as others who are in the building,” Strother said, “but I would be there to see and take care of the needs of only one person: my mother.”
Strother’s mother, Fredalene Gowen, struggles with dementia and has been a resident at Oak Pointe Assisted Living Center in Monett for the past 18 months. According to Strother, her mother’s condition has deteriorated rapidly since March, when the facility was essentially placed on lockdown because of COVID-19 concerns, with no inside visitors allowed.
“My mother is very isolated now,” Strother said. “The only people she sees are the staff members who come to her room to check on her and deliver her meals. Residents aren’t even allowed to go to the dining room to eat anymore, so they don’t get social interaction at meal time either.”
While Strother understands the need for precautions in the face of COVID-19, she strongly believes that isolation is killing more residents in these facilities than COVID-19 is.
“There’s a direct link between social isolation and deteriorating mental health,” Strother said, “especially for people with dementia. Interacting with family members can keep them from mentally slipping away altogether, which I see my mother doing right before my eyes.”
Strother and Gowen’s other children, Scott Carney, of Monett, Craig Carney, of Rogers, Arkansas, and Jane Ann Gowen, of Kansas City, are allowed window visits and outside visits with their mother – when they can convince her to come to the window or come outside.
“Some days I can’t even get her to open the blinds when I knock on the window,” Strother said. “She’s off in her own world and either doesn’t hear me, or doesn’t want to be bothered.
“Likewise with outdoor visits,” Strother added. “With the weather as hot as it’s been all summer, a lot of times Mother doesn’t want to come outside. She tells me, ‘You come in here.’ She doesn’t understand that I’m not allowed to. And even when she does come outside to visit, we’re not allowed to get within ten feet of her.”
According to Strother, residents of Oak Pointe are allowed two visitors at a time, providing that all parties are healthy. When visiting, the 10-foot distancing policy means no touching is allowed. No hugs, no hand-holding, no simple physical gestures that let residents know they matter.
To complicate matters further, said Strother, her mother has difficulty hearing.
“Because she doesn’t hear well, even when we can convince her to come outside,” said Strother, “with the distancing rule, my brothers and I have to shout at her so she can hear us, then we’re told not to yell.”
As evidence of her mother’s deteriorating mental condition, Strother points out that there have been times her mother hasn’t recognized her (Strother’s) brothers when they showed up for outdoor visits.
Strother doesn’t call the isolation her mother is experiencing, “living.”
“She’s dying right in front of us, but we’re not allowed to be close. She’s dying without us, without family to be with her,” she said. “Vendors and employees are allowed to go inside. I could take the same precautions they do and visit with her safely. I just want to be allowed to do that. I’d wear a mask and follow all the rules. I just want to get inside, get close to her.”
Jill Strother is one of a growing group of concerned citizens across the United States who are realizing the negative effect of isolation on their loved ones in care facilities since restrictions due to COVID-19 have been put in place.
“People in hospitals and residential care centers are dying alone, without family members to be with them,” she said. “We’re told that it’s in the name of safety, but whose safety? These are the people who took care of us when we were babies and made sure we grew up safely, and now they’re being forced to die alone.”
Strother feels strongly that many such deaths in nursing homes and assisted living centers are, in part, a result of the enforced isolation. Residential care facilities label such deaths as a “failure to thrive,” a catch-all phrase that angers Strother.
“How can a person thrive without social interaction?” She asked. “We’re wired up for community. When we don’t get it, we become anxious, depressed and give up hope.”
Provision Living, based in St. Louis, owns Oak Pointe in Monett, plus 17 other residential care centers in the United States. Cindy Sorgea, Marketing Project Manager for Provision Living, understands Strother’s feelings. However, she’s also proud of the guidelines Oak Pointe has in place to protect their residents and employees, guidelines which only allow essential visitors into their community, criteria that family members of residents do not meet.
“Those guidelines – suggested by the Missouri Department of Health and Senior Services – have served us well,” she said. “Up to date, we have not had even one positive case of COVID-19 in our Monett facility.”
According to Missouri Department of Health and Senior Services statistics, while by far the largest number of new cases are appearing in the “20 -30” age range, the largest number of deaths and the largest percentage of deaths per cases are appearing in the “70 and above” age group, a cause for legitimate concern for those who operate congregate care centers.
“We do allow what we call ‘compassion visits’ by family members to residents of Oak Pointe,” Sorgea said.
According to Sorgea, compassion visits are end-of-life visits, when it’s determined that a resident is nearing the point of death.
“We also give family members the option of removing residents from Oak Pointe to care for them at home,” Sorgea added, an option which is not possible for Strother, who has been dealing with health problems of her own.
It was announced August 27 that an increase of $84 million in COVID-19 relief funding will go to 520 nursing facilities in Missouri, a bump designed to help facilities expand testing capabilities, increase staffing and purchase personal protective equipment. While Missouri’s U.S. Senator Roy Blunt hopes the added funding will help save lives, for Jill Strother, the question remains, “Is it really saving my mother’s life to deprive her of social interaction, to deprive her of visits with her family?”
Strother doesn’t think so.
She is encouraging Missouri residents to sign the online petition being circulated by Missouri Caregivers for Compromise. The petition, in essence, asks that one family member or friend, per resident, be designated as an essential caregiver for that resident. The designated family caregiver could be screened, tested, wear PPE and enter the facility, just as staff members do, and could help fill the resident’s need for emotional and social interaction.
“Other states have already implemented such policies,” Strother said. “Missouri can, too.”
“I’m not going to be quiet about this,” she added. “People have always died; they’re always going to die. But they shouldn’t have to die alone. I’m urging people to contact their state representatives and senators, and, above all, sign the Missouri Caregivers for Compromise petition at the link below. We need to make our voices heard on behalf of those who can’t speak for themselves.”
Find the Missouri Caregivers for Compromise petition (titled “Essential Family Caregivers”) at:
www.change.org/o/missouri_caregivers_for_compromise_-_because_isolation_kills_too
Craig Carney (left) and Scott Carney (right) visit with their mother, Fredalene Gowen, at Oak Pointe in Monett, from the approved social distance. Submitted photo.