As Gov. Greg Abbott prepares an announcement on what’s next for his COVID mandates and restrictions, Texans are eager to know when those in nursing homes and other care facilities will be with their loved ones again. Mary Nichols of Texas Caregivers for Compromise recently discussed the far-reaching effects Abbott’s mandates and state regulations have had on caregivers and those needing care.
In an interview with Texas Scorecard on February 15, Nichols shared her personal experience about her mom, who lives in a nursing home.
“She is wholly incapacitated. She has end-stage Alzheimer’s and can’t make eye contact; she can’t speak,” Nichols said.
Like many Texans, Nichols lost visitation rights to her mom after Abbott issued a series of statewide mandates and restrictions last March in response to the Chinese coronavirus.
“When the original executive order was written (that was March 13), I really assumed that it would be a couple of weeks while they figured this out and put some safety measures in place,” Nichols recalled. “I really didn’t think this was going to be a total and complete lockdown for now what is going on a year.”
Just how have the lockdowns affected those living in nursing homes?
“In general, I can tell you that in addition to the number of people who have lost their lives due to the despondency, and weight loss, and rapid cognitive decline that just comes from the loss of the will to continue living in this kind of isolation, what we are also facing here is a mental health crisis both inside and outside of long-term care facilities,” Nichols explained.
“People inside long-term care facilities obviously do not want to live alone and isolated, and we have stripped families of that basic human right, which is a family relationship. We’re all entitled to have a family relationship.”
Nichols said staff members are suffering too, dealing with the stress of their job and residents’ relatives.
“These are people who are dealing with loss, and grief, and guilt, and separation, and stress, and anxiety, and the anticipation of that phone call that your loved one just died,” Nichols said. “You have not seen that loved one […] all these weeks and months, and living with that anticipation, the guilt, the questioning of whether you’ve done the right thing or not … all have this incredible stress that is on top of families.”
On June 12, Nichols took action, starting a petition—asking for “safe and reasonable visitation”—that got over 25,000 signatures from Texans across the state.
She also founded Texas Caregivers for Compromise to advocate for residents in long-term care, following the call of Mary Daniel’s similar organization in Florida.
“Up until then, most people I had spoken to—legislators and even peers—still were saying, ‘You know, we’ve got to do what we can to keep people safe.’ So, I really felt like an outsider, and maybe my opinion was really the wrong opinion,” Nichols said. “But after going two months without seeing my mother, I could not imagine how this could be right.”
TCC pushed elected officials and the Texas Department of Health and Human Services to adopt the “essential caregiver” program, which would allow a family member to be with his or her loved one in a long-term care facility.
Despite what Nichols called an initial “swing and a miss” rule change in August, Gov. Abbott expanded nursing home visitations last September, with DHHS announcing rule changes shortly afterward.
In February, Nichols said, “Now, here we are … and those guidelines … need to be reworked yet again,” Nichols said last month. “We’re approaching a year of these regulations being in place, and what we’re asking for at this point is to see some post-vaccine visitation guidelines.”
“I don’t know exactly what that’s going to look like,” she emphasized. “I think it’s a conversation they need to start having because, after a year, it’s time for some kind of normalcy to return to these people’s lives. We can’t keep going on like this.”
Nichols has said local governments aren’t following the expanded guidelines Abbott and HHSC issued.
Neither are all facilities.
Nichols explained that facilities either don’t know the guidelines, misunderstand the guidelines, or choose not to follow the guidelines. “They are either simply choosing not to follow them, or some of them are saying, ‘Well, we only follow CMS [Centers for Medicaid, Medicare Services] guidelines.’”
There are hundreds of nursing facilities in this state that do not even recognize Texas Health and Human Services as an authority over their operations.
Some facilities seem to ignore other guidelines when it comes to residents who contract the coronavirus. This happened with Nichols’ mother when she contracted the virus and was sent to the COVID unit.
“By CDC guidelines, she should have only been there 10 days,” Nichols said. “She was there 24 days, and I had a difficult time convincing the nursing facility that the discontinuation of transmission-based precautions allowed her out at 10 days.”
“I don’t know how long [my mom] would have been there without [my help], but I had to get [a long-term care] ombudsman to talk with the facility and help them understand that the CDC guidelines allowed her to leave.” Nichols explained that a long-term care ombudsman “is a mediator that is provided through the Texas Long-Term Care Ombudsman Program, which is part of Texas Health and Human Services, and every facility has an ombudsman.”
She added that facilities are performing virus tests to determine if residents can leave the COVID unit or not, which she said is an incorrect policy.
“A lot of facilities still think you’d have to have a COVID negative test to leave the facility, but the science now says no,” she explained.
There is a consequence to every action, and Nichols made it quite clear what the consequences are of these specific COVID mandates.
“In nursing facilities alone, the lifespan of someone who goes into a nursing facility is only six months to two years, depending on who you talk to,” Nichols said. “Depending on which one of those numbers you look at, the long-term effect here on long-term care residents is we’re taking the remainder of their lives.”
“We have made them live what is left of their lives separated from their loved one. We’ve made them live alone … made them live in fear,” she continued.
That’s the long-term effect. We’re stripping them of that basic human right, and that’s the family unit.
This article has been updated since publication.